My story... possible ASD? What next?

[ben85]

Well, there is a reason I joined this forum, so I suppose the time has come to talk about myself.

 

I'll start with the basics... I'm a 23 year old male, living with my parents in Lincolnshire. I'm currently out of work (doh!) but have decided that now is the time to take action on my mental health.

 

I wrote a huge story earlier but will just give you the gist of it now (EDIT - actually, it's still pretty huge, I'll end up summarising it shortly I think).

 

When I was a lot younger, I was classed as 'gifted' by my first school. They couldn't believe that I was able to read by myself before I even started school. I also have it on good authority from my parents that I was *very* quiet as a child. I have a sister, who seems to be the opposite of me. She seeks attention, I just want to be happy.

 

Anyway, it was noted (I've been through my old school reports) that I was excellent academically, but had 'childish' motor ability, and wasn't interested in team activities. This is obviously something that's carried on, as I never learned to ride a bike (I rarely admit it in public, it leads to ridicule).

 

We ended up moving house shortly after, and I ended up at a primary school, where I also did very well educationally. However, at this school, I was bullied quite a lot, and received a bit more 'attention' from teachers. On one occasion, despite me being the tallest in the school by a clear foot at this point, I was picked up and put into a bin, when a teacher left the room for approximately 10 minutes. Obviously when the teacher came back I was distraught. However, somehow I ended up being to blame. My teacher said that I seemed to 'alienate' others. I was basically branded anti-social, which left me even more distraught - why was I being blamed? I wasn't the one putting other children into bins.

 

Anyway, things remained pretty much the same until I started secondary school. I did very well (as was expected of me) in my 11+ exam (it was a selective, all boys Grammar school I went to). I was the top at my old school for Spelling (don't think I actually got any spellings wrong in any test in that school), and was also top for handwriting for my last 2 years. Mind you, it took me about 30 minutes to write 5 lines.

 

So far, so fairly good. I was doing well at school academically, but clearly had some issues when it came to social and physical behaviour. Not in a damaging sense to other people, more 'unusual'. Not fitting in with all the other students.

 

 

 

I joined the Grammar school, and it was immediately apparent that something was wrong. I can't say why, all I know is that I went from a student who was predicted straight A's as soon as he walked through the door, to someone who found himself on the highest grade of report card. They had different colours - Green was 'a problem, but under control', Yellow was 'daily visit with head of year', and Red (which I was promptly put on) was 'visit with head of year 3 times a day'.

 

The problems I had weren't related to my behaviour towards others in a disruptive sense. Basically I found myself unable to do the work. An issue I had (and this will either sound really stupid, or you might relate?!) is that I had a SERIOUS issue with perfection. This wasn't a problem at Primary school, as I said, I excelled in the work there, and rarely involved more than a single page of text. However my problem was as follows - if I made ONE mistake on a piece of work, the whole piece went in the bin. Doesn't matter what the mistake was. Also, I had to keep ALL of my page formatting the same on hand written work - so if I changed the way I wrote the heading on a piece of paper, I'd destroy all the previous work, and rewrite it in the amended form.

 

I've never told anyone this until now, and it's a trait I carry on to this day. Take my CD collection. I don't know how many times I've duplicated my CD collection, I HAVE to keep things in a certain order, normally also colour coded, labelled in a certain way - and if for some reason the order/colour/label has to change, I start again, even if it means throwing away perfectly good material.

 

Obviously this couldn't be kept up for very long in a good secondary school, and my grades slipped, my work wasn't getting handed in on time (if at all), and no-one could understand why - and because I was no good at communicating, I couldn't tell them. I've always been ridiculously shy. I've been told to enter someones classroom on occasions to ask a teacher if I can borrow say a book, and I've instead 'gone missing'. I really couldn't handle meeting new people, and it's still something I struggle with. I find it impossible to look people in the eyes properly. One the one occasion I tried it at school, a teacher accused me of trying to 'stare them out'. If I look people in the eye, I don't know what I'm supposed to look at, or what I'm supposed to expect. So I spend most of my time looking into the sky or at the floor. I can't even make eye-contact with my parents. Instead I look at them in the chin. It sounds really daft, but it's true.

 

There came a point where I ended up, with 3 other people in the school, being referred to an 'Educational Psychiatrist / Psychologist' (can't remember which it was). Either way, the school was really well regarded for academic excellence, but until I started, they didn't have anything like this. I was put onto Educational Special Needs (SEN?), but can't remember which level. To be fair though, I don't remember it helping at all because I didn't open up to the lady and tell her what I was going through, so it was never going to make a big difference.

 

We ended up having some form IQ tests (I really don't know why, it was pinned up in the form room, this was a very 'target driven' secondary school), and while I don't remember the exact score, at the age of 15 it was 150+. It was actually embarrassing, because it raised some unusual questions from other students. They all knew I was having issues with work, so having my supposed 'ability' plastered on the wall really didn't help matters. 'You aren't stupid, so why not just do the work' being a good example.

 

Somehow the situation progressed to me seeing my GP (a fantastic doctor), and I had an interview with him. All I remember is that he was constantly making notes on the dictaphone basically after every sentence we shared together. Nothing came of it that I recall. No diagnosis or anything like that.

 

I ended up sitting most of my GCSEs, I dropped one subject (Design / Technology), which to be fair was incredibly boring anyway. I was assured, when I started, that it would be things like 'building a go-kart'. Instead, it was 'making an automata out of MDF'.

 

At the end of that, I ended up with 11x GCSE, 9xB and 2xC. I was surprised really, because I spent most of my exams having panic attacks. During the exams themselves. In a room, with strict silence, where I was afraid to make any outward sign of my problem. I'm sure I passed out in at least one exam. But somehow, I came through it, and while the grades were not as well as I was predicted originally, I could at least be happy that they were all passing grades.

 

I ended up going to a local college after this (I think the school had enough of trying to work out what was up with me, despite me reaching their 5xB entry requirements for 6th form / A Level study). I initially signed up to do Maths and Physics at AS/A2 level, and Computing at AVCE level.

 

I'll cut a long story short - after 3 years of college study, I had 2 x AS levels at Grade D in Computing and Geography. Nowhere near what I was predicted, as usual.

 

 

 

 

 

 

 

I'll apologise for the length of the story, I probably ought to start wrapping it up. Basically, since about the age of 12/13, it's been apparent to myself that I've been different to others. Not necessarily in a bad way - just a different way. The issues with eye-contact, complete lack of confidence and lack of social skills. These have obviously been the same issues I'd had since childhood, but it wasn't until 12/13 that I began to think of myself as 'different'.

 

It's come to the point now where I've spent the last 10 years not dealing with it - just floating along. It's not been easy - trying to hold down jobs when you can't make eye-contact is pretty hard. I think people just take me at face value, which is no doubt 'he's a bit... odd', but I really want to work out what it is that has caused all this. I'm not moving forward at all. I'm not independent, don't drive, can't ride a bike (aged 23), and can't see things getting any better unless I find out what is actually 'going on'.

 

One of the reasons the possibility of autism came up was actually because I know someone who I've talked to online for several years, who it turns out has Asperger's. I mentioned this in front of the parents (well, I mentioned I'd been talking to a friend online with an Autistic condition), and my dad seemed shocked. I then took an online AQ test, and came back as 41/50.

 

I don't know what came of the meetings with the GP, with the meetings with the Educational Psychiatrist. I can only assume my parents were informed of something, and for some reason haven't told me. I really don't want to put them on the spot though, and they have quite enough problems without me digging for information about my past.

 

Physically, I do have some unusual symptoms, which could be anything. I've got a repetitive problem where I have to keep swallowing to clear my ear(s), normally my left ear. I swallow so frequently, and so hard, that my mouth aches. I also can't tolerate not having a clear nose, and blow it so hard, so frequently, and (sorry!) pick it, to the point where I normally have at least one nose-bleed a day. I even had an ingrown toenail that I hid from my parents for 5 years, until one day, after a bit of an 'episode', I went to the doctors myself, and they couldn't believe I'd not seen them sooner. I was so ashamed of having one done before, I couldn't bring myself to tell anyone I needed the other one doing.

 

Something which has become more pronounced (I don't recall them occuring at school, and if they did, they were not as severe) are 'tics', especially when I'm put on the spot with something. If someone asks me a question, or I have to communicate say in a shop but don't feel confident, I end up stuttering a bit and shaking. I honestly don't remember doing this at a younger age.

 

 

 

 

So... I'm thinking of seeing my GP, and perhaps a psychiatrist. Is that the right way to start?

 

Do my experiences above seem to tally with any form of Autistic disorder (assuming that's the polite name for it?)

 

Even if it's not something related to autism, I'd like some closure, but just wondered if anyone could relate to my experiences, and whether or not they sound remotely like autism (although very mild I imagine, compared to many).

 

Many thanks,

 

Ben

Edited March 12, 2009 by ben85

[barefoot wend]

Ben

 

First, welcome to the forum.

 

Second, I think anyone here would admit that they are not qualified to diagnose, but what you say will be familiar to many here.

 

I think seeing your GP is an important step into exploring the possibility. In the meantime you may want to read more about the subject say, in Tony Attwood's excellent book 'A Guide to Aspergers'.

 

Sorry can't be more help at the moment as I have to dash. Hopefully, someone else will be able to give you a more detailed response.

 

Hope to see more posts from you soon.

 

Barefoot

[Paula]

Welcome to the forum.

 

 

Years ago when i was trying to get a diagnosis for my son.......ive never had an official diagnosis i gave up......the professionals could never agree and it all became too stressfull.anyway............years ago whilst going through all this.my son is 15 now a dr who i was looking to see privatley to get my son assesed and diagnosed telephoned me and said something which realy helped.He said just because you have the "label" it changes nothing youre son will still be the same person with the same problems and issues and behavioures so why persue it it changes nothing.

 

It was the best advice id ever been given and i instantly stopped persueing a rubber stamped dx and just got on with it and helped my son the best i could to be the best he could because this dr was right a diagnosis will change nothing..but the persuite of one causes some people a heck of a lot of stress.

 

 

 

Not everyone will agree but if i were you id just acept youre different.that youre unique and yes it may be aspergers it may be something else who knows but knowing will change nothing.

 

I spent my childhood haveing problems fitting in,ive spent most of my adult life haveing other issues and yet it took till i was 30 to realise i suffered with bi polar disorder a dr picked up on it after getting to know me over a number of years..........suddenly everything id gone through in my past clicked into place but the knowing i was BP actually changed nothing i was still the same person who had problems with certaine things.

 

 

You sound very articulate with immence insight into yourself and what youre problems are if i were you id talk with youre family or freinds at how best to move forward and that might mean not persueing a diagnosis.

[bid]

I'm very, very glad I got my dx of AS as an adult, Ben.

 

I had spent all my life thinking I was inadequate, abnormal and dysfunctional because of the things I struggle with due to my autism.

 

Of course I am the same person, but having a formal dx has not only helped me on a personal level, it has made a huge positive difference at work too. TBH, 'knowing' for me has changed everything for the better.

 

If you want to understand who you are and this is important to you, I would say start by talking to your GP. The NAS has a very good information sheet for adults about approaching GPs, you can find it online on their website.

 

Good luck, and let us know how you get on

 

Bid

Edited March 12, 2009 by bid

[ben85]

Many thanks for the replies so far

 

I had another weird thought earlier, something which only really struck me after reading on the subject.

 

When I was still an infant, my grandparents and other relatives always used to refer to me as the 'little professor'. Now, obviously, they weren't (or at least I hope they weren't) aware of any official diagnosis towards me - nor do I believe anyone suspected anything was unusual. As said above, I don't believe I have any official diagnosis of anything, which I don't understand with the attention I had during secondary school from the SEN.

 

However, coming across the frequently quoted 'little professor' comments online really clicked this morning. I've always been a very fast talker when it comes to a topic which interests me, to the point where I'm pretty sure people can't understand me because of the speed I talk at.

 

Anyway... regarding an official diagnosis, I'd love to find out if I do have some form of ASD. I'd love the comfort of knowing more about my habits, why I act like I do, e.t.c...

 

... what is the best way to go about this? I'll confess that I went to see a trainee doctor once, and walked out with a prescription for Prozac. To be fair, I actually walked in and told the doctor I had depression, which to be honest was kinda expected, I'd just been made redundant from a job I really loved - very little stress involved.

 

Do I go to see any doctor (I'd love to say my GP, but I think I'd be waiting at least 3 weeks for an appointment) and basically tell them I'd like to be referred to a psychiatrist? Do I go through my reasoning with them, or would they dismiss it on the spot?

Edited March 12, 2009 by ben85

[smiley1590]

i have panic attacks and AS sound in way so like yourself really! yeah does sound like you could have AS i would say go docs and he can refer you to get officially assessed and diagnosed by pyschlogists and maybe get you help and support for the MH Probs you stated sounds like you have food phobia,anxiety ,OCD so quite few problems that need further looking into and investigating !

 

good luck i would speak out and get some kinda system in place! maybe get in touch with NAS they can help with assessments,referring to appropriate MH services you don't want CAMHS if offered asked if anything else can be arranged! as CAMHS mess you around so much let you down negatively impacts on you later on!

 

sounds like really struggling alone! admitting you need a diagnosis bit help and support first step in a new life! may bring forward many unexpected and unwanted fears,emotions and feelings from past! alot people undiagnosed with AS with late diagnosis struggle to cope and thats when problems start to appear and begin to show as MH probs first of then that 'something else' sounds like you readuy to find out anyways! good luck to finding what you need to know from life and find some 'missing parts' to you and your life for years hope you find what looking for a name to what you been suffering from for many years once got this it become 'clearer' less confusing' but can for abit become more intense suffocating and overwhelming! so be prepared

 

i know scary hold on in there! keep fighting be strong maybe go on meds to help with MH probs if affecting you bad but definately get into to see doc explain personal situation and go from there! explain your concerns ,fears,worries though!

 

take care

KLxX

[smiley1590]

i have stuttering and shaking this physical signs of anxiety in the body gouing throug system you really need to get properly checked out to see what could be underneath maybe CBT would also help with panic attacks or general counselling you so sound AS though displaying alot signs lining things up obessesively can be part AS be can also be OCD so need get both ruled in!

[smiley1590]

the swallowing could also be anxiety and repeativeness could be AS!

[smiley1590]

lack eye contact,social skills and confidence very promising signs of having AS in your life also around 12/13 maybe ,later for some people in teens when AS starts to 'appear' in 'different' kids of ways and like you say when you start to know notice differences to others your age another 'common' thing to be said in an AS life!

[smiley1590]

not being independant being able to drive ,ride a bike etc could be AS but also dyspraxia as affects physical skills such as co-ordination,balance,motor skills,daily living skills (dressing yourself,washing youself,feeding/cooking) etc are you clumsy? forgetful? not very organised? memory loss? find maths challenging difficult? can tell time? or get confused /mixed up? have poor time skills? lose things all time? find writing down things hard? the list endless look up 'dyspraxi' and see wht you think could be possiblity?!

 

all are affected in this area and you could have AS and dyspraxia are quite common to have both too! as i do! so look into that aswell please! worth lookng into all these medcial condtions that mentioned research info and signs and see if think it you to begin with then go get official assessment / diagnosis! process

[smiley1590]

spunds like you have high IQ which common in AS sign not always everytime but alot time! little professor matches and being depressed another MH prob common atttached can be anxiety sometimes too with AS especially so! and being put on prozac meds also very common too!

[smiley1590]

having to keep re-writing work until in your eyes 'perfect' yet another sign AS keep being obessive and that 'craving' to be 'prefect' and 'normal' the hiding in this in shame showed in your work! you should be really proud of what you've achieved grade wise and you've worked so hard studied hard and paid off! i love you to 'chase' and 'knock down' doors and systems to get a diagnoses as think more than one there with you and struggling in education trying to 'avoid' going into class another common thing too!

[smiley1590]

it common for lack of eye contact with AS to look at floor ,sky anywhere than at someone eyes!

[smiley1590]

exams caused my anxiety/panic attacks to increase! get worse!

[florrie]

Hi Ben

 

I've just read your post. What did you decide to do.

 

My advice would be as it took 10 years for my son to get dx and another 10 for myself is to find out who the adult asd specialists are as there are not many,most adult psychiatrists in the NHS are not qualified or trained or skilled to recognise ASD, they don't carry out established diagnostic procedures which would clarify whether you have asd.

[Lifevoyager]

Hi Ben

 

I hope things are working out for you, and you are nearer to a dx if that is the route you have decided to take. I can relate to a lot of what you said and it has made me remember a nick name my family used to call me when I was young- the absent minded professor!

[aleph_nought]

Hi Ben,

 

I'm 32, with a history that sounds very similar to yours in many ways. I eventually saw my GP about the issue, and have recently been diagnosed with AS by a psychiatrist. Personally, I found it a great relief putting a name to the 'oddness' I'd always felt about myself, and am now getting help for some traits which cause me problems - perhaps more importantly, I'm also recognising that AS brings with it some real benefits. I'm good academically at things I enjoy - the challenge is to channel that ability, and overcome the other hurdles.

 

If I were you I'd see your GP. It sounds as though there's some stuff that's causing you problems, and whether or not its because of an ASD is worth checking out.

 

 

[jordansmum33ok]

hi Ben,

quite alot of what you describe is my son..

espically the writing has to be perfect part.. even if pg is creased he thows it away

he also can have numurous nosebleeds but thats a family thing.

eye contact no.. tics... he does figet a hell of alot and nodds abit whilst watching tv

 

hope you get the answers