Getting a diagnosis as an adult and if I might fit

[Amanda_H]

Hi. I'm new here. But I have read many posts on this forum and I've read about getting a diagnosis as an adult both here and on the NAS website. But I mean, none of it relates to me... do you know what I mean? I'm not sure if/how some of the things I have experienced would fit with a diagnosis of AS.

 

I have suspected I could have AS for about three years. I'm 18 (nearly 19) now. When I first came across a description of the condition I told my parents and they just laughed. They didn't take me seriously, but now whenever I get upset that, for example, the pick-and-mix is different or they are three minutes late in picking me up, they laugh and say, "it's her autism."

 

In primary school (I am ashamed to admit) I used to bully this one girl. Her mum came into school and told me to stop it, but I didn't realise I was hurting her at the time. I used to not let her play with us because I thought she ran too slowly. After her mum came into school I think I still didn't connect what she'd said to what I was doing, because I continued. And eventually this girl's mum told my teachers and my mum, and I just remember crying because I was getting told off, not out of any guilt about my behaviour towards this girl. I didn't have many friends after that. I was always very attached to the teacher I had at the time; following them round, etc. I have always found it easier to talk to the teachers rather than the other children.

 

I used to have a friend over to play nearly every night of the week. We fell out frequently. I met her when I was four and this is the same friend that I had right through school. We used to ring each other at exactly the same time every night to ask if she wanted to come over (I remember this one time I answered the phone with a friendly "Hello!" only to find it wasn't her!). We used to have a whole family of dolls. Mine all had names and birthdays and we'd play games which usually involved medical equipment of some sort. I remember hooking up my dolls to IV machines (shampoo bottles with string attached) and putting plaster casts on their legs (tissue with water and glue). But now if I find myself in a situation involving young children, I am very bad at playing "normal" pretending games with them. I can't do voices or think what a child might want to do.

 

I was very clever as a child. I used to read women's magazines from about the age of four. I think that's where I got all the ideas for the games with the dolls. Last April I took an IQ test and qualified for entrance to Mensa (top 2% of the population), something I am neither really proud or ashamed of. I am just wondering whether anyone's had any experience of having a high IQ and how that can impact on their social interactions. I was bullied a lot in high school for being a "swot", and they said I talked weird, was fat, was anything insulting they could think of. I always felt different and unable to defend myself. Everyone in the school seemed to hate me and I got bullied a lot too by kids who were three or four years younger than me. I only had one friend for most of high school. It was a fairly intense relationship. I am like that with my friendships. I tend to get really involved and obsessive, like I want to spend a lot of time with them and I can never understand why people don't want to spend such a lot of time with me. I tend to get very paranoid about little things, like if someone doesn't smile at me when they see me, or if they leave earlier than usual, I start to think it's because of something I have done.

 

I left school with very good GCSE grades and did not want to be in the local college for two years with all those people who hated me, so I went to a sixth form 10 miles away to get away from them and try and make a fresh start. I went with my best friend (the friend I talked about above) and for the two years I spent there I didn't make any friends. I used to think that I was just shy, but it's more that I don't know how to talk to people. I can't think of suitable topics to talk about. Now that I am at university it is slightly easier, because the friends I have are fairly intelligent and we tend to have conversations that centre around science/political opinions/opinions in general that are not to do with me personally (like whether I like the new series of House and why). I never make eye contact when I am speaking. When other people are talking I can look them in the eye but as soon as it is my turn to talk I have to look away. I'm not sure why; it's like looking at them distracts me from what I'm trying to say.

 

I smile ALL the time, regardless of whether I am happy or sad. During the time I was at sixth form I got more and more depressed, started to self harm, and eventually decided to see a counsellor. I had a year or counselling which helped a lot with the depression but not with any of my social difficulties. I was never able to articulate my feelings out loud. The sessions generally consisted of him talking for 90% of the time, 5% was silence and the other 5% was me talking. If ever I get feelings that are too overwhelming it's like I'm paralysed. I can't say anything out loud that's to do with my feelings. If people ask me how I am I always either say "good" or "okay", even if I'm not. Because you see, if I'm caught off-guard with the question I have to think about how I feel. It amazes me how some people, when they're asked how they are, they can respond instantly with something that sounds honest, and then verify it with a little story straight away, like "I'm good, I just met my friend for lunch" or "not so great, I have a lot of coursework to do and it's stressing me out".

 

I am not bad in group work or discussions. As a part of my university course, we have to meet in a group of 8 twice a week, plus a tutor, to discuss topics. But I'm okay with that, because I know when it starts and when it ends, and what we are meant to talk about. We're basically just presenting facts to each other. I find that I always interrupt either because there's a small silence and I'm not sure if it's my turn to talk or because somebody has got something wrong (it could be a really little thing) and I'll just talk over them without really realising I'm doing it. I am not so bad with more informal group work either, like we had to make a bridge before with some straws and sellotape. I am okay with mostly any type of structured group work because I know when it starts, when it finishes and what we're meant to do in the intervening time. I only like to go to more informal activities if I have organised them myself, so I know exactly when they start and exactly when they finish. If one of my friends asked me if I wanted to go to the cinema I would have to ask what time exactly, what film, when it ends and what time we'll be back. If they couldn't give me an exact response I would usually say no, because for some inexplicable reason it really worries me when things don't run exactly on time. We usually leave the hall of residence at 8:30 in the morning, but today my friend came late for breakfast and we left at 8:34, and I was annoyed and agitated for the whole bus journey.

 

If someone says something is going to be done for a particular day or time and it isn't, it upsets me. For example, the university said our January exams would be marked for a particular date and they would be up on the notice board for that particular date. I made a special trip down to get the results and they weren't there. I had to ask everyone I knew whether they knew why the results weren't up and then I had to email and ask why the results weren't up and when they would be. It really frustrates me. If something gets cancelled at the last minute it's the same, even if it benefits me, like we were meant to have a lecture a few weeks back which I turned up for, but was then cancelled, and I got to go home. It was still very frustrating and upsetting in a way I can't seem to put into words.

 

I am really bad at remembering verbal instructions. I always have to have it written down if there is more than one thing for me to remember. Like I sometimes have to go to the dispensary for dental materials when I am working with my 4th year clinical partner and if she wants more than one thing I have to keep repeating it and repeating it in my head. If someone talks to me while I'm in the queue I get annoyed and it distracts me from the list and I usually have to go back and ask again.

 

I don't tend to really take much notice of other people's feelings if they are expressed verbally. I don't think I really know what people feel unless they tell me, or if they cry. I have a friend whose uncle died recently, and she was telling me about it and she didn't look very upset to me, and I was just nodding. Then she started to cry and I realised that she was upset about it. I never know what to say if people are upset. I have a few stock phrases, like, "that's bad" or "oh no" or "what are you going to do?" but apart from that I have no idea. If people I don't really know ask me questions I find uncomfortable, i.e. anything outside of work (like "are you coming to -----'s house this weekend?") I tend to go silent or stammer out a reply and hope that they don't say anything else. I get intimidated by people who talk too fast or about more than one topic in quick succession without giving me a chance to reply, or if there is more than one conversation going on at the dinner table at a time I can't keep track of what they're all saying. Many people have told me I talk too loud (and one person has said I talk too quietly) and you know how people sometimes point out things about other people, like "her hair is different today"? I always immediately turn around to look and am often embarrassed because they look at me back or the person that pointed it out says, "why did you turn around so fast? It makes it really obvious!"

 

I can get quite obsessive with some of the things I do. I can get obsessive about work - I have to have it all done for a particular time. When I was very young I remember going through phases of being quite obsessive about things. I recall wearing a bike helmet and knee and elbow pads in the house for a few weeks when I was about nine. When I was around 11 I bought every book on space I could find and became quite knowledgeable. I started sewing around this time last year and ever since then I think about sewing all the time and I even dream about the next skirt I am going to make! I started knitting when I came to university and my dad now calls me a "wool hoarder" - honestly, I have tons.

 

I often say things that are socially inappropriate, but I don't realise until afterwards. I said to my mum the other day "you love it when people you know die so you can look in the newspaper and exclaim over it" (she reads the deaths section of the local newspaper avidly each week). She got quite upset and asked how I could say such a thing. At the time I just said it. I also called my friend lazy and non-committal, but I didn't know she was offended until quite a long time afterwards.

 

I didn't want anyone to know about the counselling, because I am very private with my feelings (often because I don't know what they are, but often because I don't trust many people) and my mum found out when she read my mobile phone and found messages I had sent to my counsellor. My mum and I have had a difficult relationship, mostly since I became a teenager, and she has been very emotionally abusive towards me. This is one big barrier for me towards getting a diagnosis; she is very opposing to many things that I do and this would just verify that her daughter is not "normal". If I were to get diagnosed I would not want her or my dad to know because I want to do it for me. My mum is very social and I think it's quite strange that I was brought up by her for most of my life (my dad used to work away a lot, especially when I was between the ages of two and 12) but we are poles apart on the social front.

 

Although, I have read that only children (which I am) are often a lot less social. So I don't know. Do you think any of what I've written above fits with the diagnosis of AS, and anything that really doesn't? Would I necessarily need a parent's involvement in diagnosis, as I am over 18 and would be very opposed to either of my parents or pretty much anyone in my family knowing? Is it possible that I could have gone nearly 19 years without anyone noticing that I could possibly have AS?

 

I am sorry that this has turned out so long - and I still feel there are bits missing that I can't quite think of at the moment!

 

It would be really, really helpful if you could help and please be honest with me about what you think. I have tried to be as honest as possible with what I've said so that it's as accurate as possible and I'm not trying to make things up which "fit" with the criteria.

 

Thank you in advance,

Amanda xxx

[baddad]

Hi amanda

 

Boy! That's a helluva post!!

'If you might fit'... that's almost an impossible question, because every autistic person is different. That said, you are obviously concerned about many aspects of you life, so that's worth investigating further whatever the final outcome...

With regard to some of the social situations you describe it sounds more a case of being 'out of step' than marching in a completely different direction, IYKWIM. I can recognise those elements in my son, who is very socially active and interested, but finds the details hard to negotiate. Certainly the classic descriptions of 'socially aloof' don't fit him, but that just raises new problems rather than solving any

 

Some things you say do sound quite 'AS', but there could be many other factors - social, emotional and historical - contributing to that. At the risk of sounding twee, it's probably worth reaching some conclusions about 'who' you are (from your own POV rather than how you might seem to others) rather than seeking explanations at this stage about 'why' you are. Hope that makes sense and doesn't sound patronising(?)

As far as your mother goes, it is likely with any adult dx that information she can offer about your early development would be significant in assessment. From that perspective alone it would be worthwhile building some bridges if you can...

hope that helps

 

L&P

 

BD

[Kinda]

Hi Amanda H

 

What an interesting post which had me deep in thought. I'm afraid I can't answer your question but can understand where you are coming from and for me what you have said doesn't necessarily classify you as AS but I rely on others with more knowledge to advise on that.

 

Its interesting in that just recently I have certain traits and I've been having the same thoughts, and my wife even told me at one stage that she thought the same.

 

Where I work I'm always the one seeing the problems with any initiative and I always sort problems out very different from others and this means I'm very isolated in terms of working with colleagues.

 

I'm also very direct when I deal with people and can come across aggressive which I don't even notice.

 

I think for me I'm trying to understand what I would gain from knowing if I'm AS other than more of an acceptance from immediate friends and relations that my "strange" ways are not my fault, so not really sure if I personaly would gain anything from it. Also my "strange" ways have become worse as I've grown older.

 

I have a son who is not diagnosed as AS (but is diagnosed as dysphasic) but some of his traits lead me to research AS and while I think he is on the spectrum but not severely affected his mum and me notice it in terms of his relationships. We haven't mentioned AS to him but I think he is aware of our thoughts, its a family thing not telling him because he had great trouble accepting he was different and just wanted to be "normal" and so we have decided not to add another label to him.

 

He is working now so we have tried to guide him to get some specific help which after a shaky start is now going ahead and seems to be working. The problems for my son emanate in relationships which is the area he is getting help with which I think are very difficult to explain the "rules" about since we tend to learn by the mistakes we have made ourselves but if you don't understand the mistakes nor the impact it has on others then I can understand its very difficult.

 

I will watch the responses to your post with interest, what I do see from your post is an intelligent, and sensitive person and for me that counts for a lot in my book.

[FKlama]

Hi Anamda,

 

in my opinion some components point towrds AS, but as I am no professional and only have your post, I can only tell you what I think.

 

Last April I took an IQ test and qualified for entrance to Mensa

 

I am a Member of Mensa, and have noticed that due to my high intelligence I can be very good at hiding some autistic traits or compensate for them. Group work 'can' work, if I concentrate hard on the group interactions. I see this as an 'emulation' of NT behaviour, but just like with computers, emulating a system eats up a *lot* of resources.

 

This is one of the main reasons that I hate group work, I spend 90% of the time on the interactions and not doing something 'wrong' and only 10% on the task at hand. Most of the time I would have been a lot faster on my own.

 

I also studied the NTs (and their weird behaviour) for quite a while now, and I usually have a good idea why they do the things they do. The only problems are, that this does not work on the fly and that I also have to do this 'actively'.

 

I can probably pass for an NT on 'fist glance', but once people get to know me, they ususally notice that I am weird (I really like that word). It is only really a set of 'subroutines' that I have built over the years, that use my shear 'processing power' and skill for abstraction to be 'partially compatible'. This only really works when there are no 'stress factors', if there are, all this 'emulating' can suddenly 'break down'.

[cmuir]

Hi

 

I'm NT, but since my son was diagnosed with Aspergers 2 years ago (he's 6) and I've generally become much more knowledgeable about it, it's also left me analysing (and occasionally over-analysing) things and made me look at myself. For instance, at school I was painfully shy and I had only a few friends. I felt that I didn't quite fit in. However, over the years, I've become a much more confident person - think that's something that comes with age and maturity. Lots of people have idiosyncrasies and it can be difficult to distinguish between those and ASD traits/characteristics.

 

Guess what I'm saying is that whilst you've detailed a few things which may point to you having an ASD, it's impossible for anyone other than a specialist to give you a definitive answer. I get the distinct impression that you'd like to know one way or the other if you have an ASD (I personally believe that it's important to know one way or another, hence reason I actively sought to get answers for my son). In which case, you need to start with your GP and ask for a referral. You can also get some helpful advice for NAS. It's a real shame that you don't have as strong a bond with your mother as perhaps you'd like - support can help a great deal. Be strong and remember that you have to think about yourself.

 

Caroline.

[Tally]

Hi Amanda, and welcome to the forum.

 

There are certainly many things in your post that point to ASD, so it's worth looking into. There could be psychological causes for many of your symptoms. For example, if you were bullied in school, that may well leave you unsure how to talk to people. That's why you need someone experienced, to work out the difference.

 

The NHS are not very good at identifying ASD in adults, and many mental health professionals don't even know what it is. You may find that assessment is simply not available on the NHS for you.

 

In order to diagnose ASD, the professional needs to identify that the symptoms have been lifelong. You may have medical or school reports from your early years that could provide this evidence. Some professionals do insist on having contact with a parent. They may be able to ask a parent to fill in a questionnaire without revealing the purpose. You would probably need to contact a few professionals to see if there is a way for you to be assessed whilst maintaining your confidentiality.

[Shnoing]

If you are indeed in the "top 2%" IQ range, you usually are able to pretend to be NT without any major problems for some time. It's just very stressful. You need some room where you can be yourself instead of acting NT, so it would be ideal if your parents accepted you as you are.

 

Is it possible that I could have gone nearly 19 years without anyone noticing that I could possibly have AS?

 

Hey, that's not so much! With me it was 34 years! (And I haven't told my parents yet ...)