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Asperger's Syndrome makes sense!
Former Member
:)Posts: 2,072 Boards Champion
I am making this post as I feel it would really help me to talk openly about me and my struggles with Asperger's Syndrome (AS).
I have always suspected something was different about me, but been unsure about what it was. From a young age I've struggled to fit in and as I got older I've started to question- why generally everyone is a certain way, and I seem to be different. In the past year I have been using mental health services, and recently my psychologist suggested that she thinks I could have Asperger's Syndrome. Honestly this wasn't a complete shock- I used to type up things about myself and quite often the words "autism" and "asperger's syndrome" appeared but I dismissed it at times, and was always to scared to say to anyone. However my psychologist said to me (without knowing I've suspected it before) and from there she referred me to the autism service. My referral to the autism service has been accepted and I am currently on a waiting list- they aim to see me by the first week in December this year (at the very latest).
I know its not a good thing to self-diagnose, but I just know inside I have it (especially more so after doing research into it). I hope to use this thread to vent about my struggles. There's a lot of things that I experience which I believe is related to AS, but I'm only going to mention one or two things tonight (depending on how I feel after I write the next one) . And I will probably use this thread to add to it- I've learned through talking about things on support chat I find it helpful, and hence one of the reasons I made this post, is to have this thread there and open for me to post on should I wish too. I know I could just write a diary but I feel its more helpful to post on here (as I know people can read it too, and I can't discuss this with friends/family).
I'm going to start now.
1) The other day I made a post on the "I need a hug" thread, saying "I WANT TO SCREAM!" - just wanted to use this as an example to explain a bit more. Well sometimes perhaps I get overwhelmed or uptight (sometimes I not really sure of the reason) that I will start shouting, screaming and punching objects. I tend to say random words- it feels like its words coming out and I don't have control over what I say. Sometimes I repeat these words. One phrase I've noticed I tend to repeat is "witches are bygones" (no idea why, I don't even know what a "bygone" is) , but I might say things that don't make sense like "houses are waters, the sky is falling or just repeat "shout" lots of times really fast" (these are just examples). I might start screaming, and it again feels like its coming out my mouth but there is no connection to my brain. It feels like I can't stop it, and most of the time I don't think I'm doing this behaviour, but if I do become self aware and try to stop (like 2 days ago) the screams and words still come out. I also quite often punch objects (yet again it feels its not from my brain) and usually I do both in combination. Sometimes there are triggers, other reasons I'm not sure why. The other day I got frustrated and upset and it triggered me to act this way. Well the reason I say this, is after talking to people at an autism group and researching things online, I came across a term called "meltdowns" , which is common in those with an autism spectrum disorder. I read about experiences and more into "meltdowns" and now I feel I can label these experiences as meltdowns. The other day when I posted in the "hug" thread- I was upset and frustrated yet in public. And obviously I was trying really hard not to act like this in public, it was so hard stopping myself from screaming and that post helped me voice it- as I really, literally wanted to scream" , I did sit in a quiet cafe and I did end up punching the table a few times (oops) but luckily I don't think anyone noticed. However everything was building up inside and it was horrible
That's all I want to mention for now. After re-reading I feel quite embarrassed and worried what everyone on here will think of me, but please understand this:
I need to just get it out, and my need to express myself is overpowering that of my embarrassment and worry. This is me, I am explaining my feelings and experiences just like many people do on here and I guess from an outside perspective - it may not be what everyone experiences but I want to express my true self, just as many people do on here. Yes I am different, but everyone is different - aren't they. All I ask is please no judgement, not that I expect it anyways.Thanks!
I have always suspected something was different about me, but been unsure about what it was. From a young age I've struggled to fit in and as I got older I've started to question- why generally everyone is a certain way, and I seem to be different. In the past year I have been using mental health services, and recently my psychologist suggested that she thinks I could have Asperger's Syndrome. Honestly this wasn't a complete shock- I used to type up things about myself and quite often the words "autism" and "asperger's syndrome" appeared but I dismissed it at times, and was always to scared to say to anyone. However my psychologist said to me (without knowing I've suspected it before) and from there she referred me to the autism service. My referral to the autism service has been accepted and I am currently on a waiting list- they aim to see me by the first week in December this year (at the very latest).
I know its not a good thing to self-diagnose, but I just know inside I have it (especially more so after doing research into it). I hope to use this thread to vent about my struggles. There's a lot of things that I experience which I believe is related to AS, but I'm only going to mention one or two things tonight (depending on how I feel after I write the next one) . And I will probably use this thread to add to it- I've learned through talking about things on support chat I find it helpful, and hence one of the reasons I made this post, is to have this thread there and open for me to post on should I wish too. I know I could just write a diary but I feel its more helpful to post on here (as I know people can read it too, and I can't discuss this with friends/family).
I'm going to start now.
1) The other day I made a post on the "I need a hug" thread, saying "I WANT TO SCREAM!" - just wanted to use this as an example to explain a bit more. Well sometimes perhaps I get overwhelmed or uptight (sometimes I not really sure of the reason) that I will start shouting, screaming and punching objects. I tend to say random words- it feels like its words coming out and I don't have control over what I say. Sometimes I repeat these words. One phrase I've noticed I tend to repeat is "witches are bygones" (no idea why, I don't even know what a "bygone" is) , but I might say things that don't make sense like "houses are waters, the sky is falling or just repeat "shout" lots of times really fast" (these are just examples). I might start screaming, and it again feels like its coming out my mouth but there is no connection to my brain. It feels like I can't stop it, and most of the time I don't think I'm doing this behaviour, but if I do become self aware and try to stop (like 2 days ago) the screams and words still come out. I also quite often punch objects (yet again it feels its not from my brain) and usually I do both in combination. Sometimes there are triggers, other reasons I'm not sure why. The other day I got frustrated and upset and it triggered me to act this way. Well the reason I say this, is after talking to people at an autism group and researching things online, I came across a term called "meltdowns" , which is common in those with an autism spectrum disorder. I read about experiences and more into "meltdowns" and now I feel I can label these experiences as meltdowns. The other day when I posted in the "hug" thread- I was upset and frustrated yet in public. And obviously I was trying really hard not to act like this in public, it was so hard stopping myself from screaming and that post helped me voice it- as I really, literally wanted to scream" , I did sit in a quiet cafe and I did end up punching the table a few times (oops) but luckily I don't think anyone noticed. However everything was building up inside and it was horrible
That's all I want to mention for now. After re-reading I feel quite embarrassed and worried what everyone on here will think of me, but please understand this:
I need to just get it out, and my need to express myself is overpowering that of my embarrassment and worry. This is me, I am explaining my feelings and experiences just like many people do on here and I guess from an outside perspective - it may not be what everyone experiences but I want to express my true self, just as many people do on here. Yes I am different, but everyone is different - aren't they. All I ask is please no judgement, not that I expect it anyways.Thanks!
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Comments
Oh, and you won't be getting any judgement here. It's great that you emphasised your reasons for starting this thread, as well, as it really helps the community to know how to approach things.
All the best with however this works out, and I look forward to reading about how it develops!
Just want to say I think it's great that you've decided to talk about this here! I'm really glad having a place to write about what's going on helps you, and also I completely agree with Mike -- it's really fascinating to read about your journey and I think that as well as helping you to have a place to talk about these things without being judged (as you said, everyone's different), I think it's interesting for others to get an insight into what it's like to be in your position. Learning about other people's points of view can't be a bad thing in my eyes c:
I hope that continuing to talk about your experiences helps to relieve some of that pressure on you, and I also look forward to whatever else you wish to write about.
*hug*
For those of you who don't know what it is, I think its summed up very well here:
"Stimming" to me, is that big secret I always had yet never had a word for it until recently. As a child many people raised concerns over my "hand flapping" and as a result my parents used to tell me off for doing it (as they were trying to convince the school etc. that I was "normal"). My parents called it "the shakies". It wasn't something I did on purpose, it just happened.......I do it when experiencing a range of emotions (good and bad) from excitement to stress. Over time I learned to control it.......BUT to this day I HAVE NEVER STOPPED!! After always getting told off for doing "the shakies" I learned to only do it in private at home (including away from my parents). To this day my parents don't know I still do it, and its been my "big secret" for life......up until not long ago. With my depression and anxiety spiralling I reluctantly told my psychologist one of the many reasons why I feel I'm weird and don't feel normal (as this was upsetting me). I told her about the hand flapping and her reaction was...... "Can you show me?". I started blushing but I did do it. I felt a sense of relief as I always do when I stim, yet I broke my rule by showing my psychologist so quickly panicked after. My rule is: "the shakies + around people = judgement". Thankfully my psychologist never judged me, and even encouraged me to write it in my safe plan (as it is helpful).
As I got older I got curious as to why I do "the shakies" and after learning about the schools concerns etc., I decided to google it. The common words that appeared were "autism" and "asperger's syndrome". After looking into autism spectrum disorders I felt a lot related to me, but just dismissed it and I was also scared to tell anyone about my findings. I also learned a lot more about stimming and realised that I have more than one stim. Additionally I realised I subconsciously substituted a lot of my hand flapping in public, with other stims which don't seem as noticeable- including "pacing". "Pacing" helps me calm down a lot, sometimes I just can't sit still and I have this urge to move......especially in public its a good way to not attract too much attention. If I want to be very discreet I can pace but walk a certain route "e.g. a circuit" so people just think I'm an ordinary person "walking". But to be honest sometimes I just let myself pace in public now, I often do it in bus stops. I know its not socially acceptable but I just need to do it.
However, often I don't realise when I am stimming. Usually when I pace I keep my head down (basically staring at the ground) and to an outsider it looks like someone staring at the ground whilst walking (usually at a fast pace), sometimes I giggle to (even though I'm not finding anything funny). Mum used to tell me off when younger, whilst I was walking to school. And in the past few weeks, mum has been telling me off as she's seen me walking home from the bus stop. My mum keeps calling me "retarded" and saying I should be locked up- which really hurts my feelings. She doesn't know what stimming is and that its common in people with ASD's. However she sees me stimming often (excluding hand flapping) and doesn't even know that's what it is, e.g. recently I've started whistling in the house, normally I repeat the same tune (usually its the tune the mockingbirds make in the hunger games). Thing is she just thinks I'm doing it to annoy her and she always shouts "AMANDA!!!!". My parents have told me they think I'm quite childish for my age and that I'm weird. Basically from my point of view, I try my hardest to act "normal" when out, but as soon as I get home everything comes out at once (sometimes very intensely). I'm 19 but at times I will run about, sing, shout and jump on furniture like a child and that's all my parents see......from my point of view I have all this pent up energy and emotions and sometimes it just comes out that way. But I would never act like this in public. To be honest it makes me feel like I'm 2 different people, on one hand people think I'm "Amanda, the mature young lady, who is at university", but as soon as I get home I'm "Amanda, the really immature, 19 year old who acts like a 9 year old at times"- makes me feel "fake" at times. It's confusing like how can I be mature and immature at the same time?
How does "stimming" feel to me?
In simple terms it feels like an adrenaline rush (to me), my heart will race, and I have this very intense urge to move my body in many ways. I have this sensation in my arms and legs, that makes it impossible to sit still. Quite often my emotions trigger this sensation (but not always)...... excitement, stress, anger, sadness, happiness etc. Usually when I stim, everything builds up more BUT it reaches a point, and I feel my heart suddenly slow down, I take a deep breath and I feel a massive sense of release..... I can relax now.
How often do I stim?
Every day. The first thing I did this morning was not have breakfast, it was stim. Same goes for the last thing I did before I went to sleep. I love music and in more way than one- I often use it whilst stimming, I repeat the same songs over and over again, tend to be faster paced and feel like they have a story to them. I have 2 categories of music I like- "stimming music" and "normal music" (that's the music I use just in the same way as anybody would). Stimming is a massive part of my life, some days I stim more than others. I even sometimes spend my full day stimming. So far I have had about 3 stimming sessions so far (which I can recall) and will probably have a lot more to come. The only downside to "stimming" (other than judgment from others) is that it can be very tiering. Yet it's ironic as I can't relax without it!
After writing this, I feel another huge sense of relief!
Just wanted to see how you are? You should be proud of yourself for opening up
Also I am glad you feel a sense of relief from posting. We are here for you
Keep posting, it sounds like it's helping :thumb:
Thank you *BananaMonkey*
I know what I'm talking about is very taboo/ not very socially acceptable, it's just draining keeping everything to myself - hence talking on here has been really helpful! And I'm so glad that people aren't judging me, I was worried about that!
Today I'm a bit low and frustrated, mums making comments again - I'm tierd of trying to be someone else just to fit my mums view of "normal" - I know she means well. I just want people to leave me be and to be more respectful of me. Outside of TheMix, my groups (autism and MH ones) I feel very misunderstood by friends and family
I'm sorry to hear your feeling low today. *hug*s we are here for you.
We wont judge you and we like you for who you are.
Thank you, I really appreciate it
I wish friends and family could be as understanding as everyone here!
Sometimes the people closest to us arent as understanding which is a shame. I hope one say you get the understanding from them that you deserve.
It certainly sounds like you felt a huge sense of relief, really glad it helps for you to post. I'm sorry to hear you're feeling low today, and that you feel you need to try to be someone else around your mum. It does sound exhausting and frustrating
Everything about you makes you you! And as long as you can feel comfortable in your own skin, that's all that matters :yes: We certainly aren't here to judge and we are rooting for you; hang in there *hug*
Thanks Raich,
I'm trying to recover from my MH difficulties and these comments do not make it easier- they trigger low moods, and trigger other issues too
Hence I really am getting impatient - I'm on a waiting list for the autism service - according to their aim of seeing people within 31 weeks of recieving the referral- at the latest I should see them by the first week of December this year. I really hope it's earlier though, I'm hoping it will help my parents to understand me more in the long run, hence hopefully stop the comments, and trying to persuade me to be a certain way (which I am not). No wonder I get so low at times, trying to fit in and conform to how my parents think I should /want me to be.
Ever since I discovered that I may have AS, I have been able to better accept myself.....and its helped with the depression a bit (although that's another issue in itself, some things could be linked to it). Yet when I get called names, I think whats the point. It has triggered my suicidal thoughts again (on/off throughout the day, I am prone to these already).
Sorry if I'm not making much sense, finding it hard to explain!!
Just checking in to see how you're doing today? By the way your last message did make sense :yes:
It sounds really tough that they're making these unhelpful comments and making things harder for you. Is it something that they know is affecting you like this do you think?
Sorry to hear that you're getting really impatient being on the waiting list for the autism service. Sounds annoying to have to wait, do your parents know that you're on the waiting list for this or that you've discovered you may have AS at all?
Not sure if you've seen this before but there's some information about getting an AS diagnosis here which might be useful to read.
Sounds really positive that you've been able to better accept yourself since discovering you might have AS and it's helped a bit with depression too. What about discovering that you might have AS has helped you to better accept yourself? It's really good that your writing here about how things are going for you.
We're all routing for you!
Hi Steph,
Thanks for your reply!
My mum is aware they hurt me, as I told her by saying "I feel upset ......" (used assertiveness techniques my psychologist recommended)- and her response was "I'm not going to pussy foot around you".
My parents are aware- I felt I had to tell them, as apparently they like to speak to your parents about childhood development etc. It was really hard but I did it. My dad is very supportive of it, when I told him, his first words were "its always been on my mind", then I asked "what do you mean?" and he said he has suspected it before. My mums reaction wasn't the best (could have been worse I guess) - she asked me why I want to be labelled. And just recently she started a discussion on this again. She says she thinks I just want a diagnosis so I can tell people I have it, and she said I might have it, they might have it.....but doesn't mean to say I want to be diagnosed with it! I'm feeling really frustrated as I try to explain my reason is to help better understand myself, be myself more (as I feel a need to be a certain way and it makes me really down) and also she is unaware of my past etc.
NAS have some good info, thanks. Thankfully I don't need to try and persuade a GP to refer me, as my psychologist suspects it and she approached me- probably made it easier to get the referral from a psychologist vs a GP anyways.
There are many reasons to me feeling I can better accept myself as a result of discovering AS- there's a huge amount of reasons but basically I've felt different a lot in many ways, I've wondered why I act and feel certain ways (but never knew why), hence I've always considered myself a bit "abnormal" (in some ways) and I get and feel a lot of pressure to be a certain way and its taking its toll- so the diagnosis would help this.
On that note- I struggle with writing a lot, and I tend to write in too much detail (people tell me) and I struggle to put my words together (even sometimes when I talk I get my words jumbled up and after talking realise I've said words in a weird order). After reading an article last night I discovered a lot of Aspies struggle with this too. I struggle with essay writing and application forms- I can do them but it takes me a while, and even then I need a lot of input- I find it really stressful. I just wanted to say that as I feel that way right now as I write (and often when I write) and I'm getting really stressed now as I feel my sentences are mucked up and I'm writing too detailed - I often find that.
When I'm out with friends I sometimes say stuff and I realise it's really random- ie. they were talking about one thing and I just blurt it out. And also I find silly things funny and everyone just ignores what I say (hence I know I've said something inappropriate). I also tend to burst out laughing at random things and feel I have a delayed reaction when laughing sometimes. I'm only learning this now, but I don't ever realise before I say stuff
Just to add when I say "inappropriate" I don't mean like rule-breaking or saying abruptly mean things, I mean socially inappropriate in conversation
I need and want to vent about AS again. I've been going to an autism group recently and today I went to my first women's only autism group. Both of which really helpful, and have been having many sudden moments of realisation where I feel it makes sense. I am learning so much about myself through discovering AS and discovering what works and doesn't work for me- and still am!
I wanted to talk about the more fun (in my opinion) aspect of Aspergers/autism. You may have heard that people on the spectrum can have some very specific hobbies- some that sounds quite common and others that don't. They call them special interests. They differ from hobbies in that they can become quite obsessive and the person can gather lots of info on them (note I am know expert and this is my interpretation of it, it may not be 100% accurate). Also some people on the spectrum enjoy collecting (including myself).
The reason I wish to discuss this is, as I used to be very ashamed of my certain hobbies/special interests that I have partly because some of them may seem strange to others. But I am now letting myself do what makes me happy more. And to be honest although I still have depression, I generally feel better when I partake in these special interests. Also my peers at the autism group have inspired me to be more myself. I feel in writing about this, this will help me "come out" (in simple terms) with what I enjoy yet feel ashamed to admit, and therefore feel like a good release or vent.
Here goes (I start with collections, but go into special interests along the way, as a lot of them are both special interests and collections) :
1) Bouncy balls and marbles: My first ever collection was of bouncy balls (started at a very young age- maybe 4 or 5). I still have my bouncy ball collection yet I lost a few from when I was younger
2) Keyrings- same as above, my 2nd oldest collection, I have many keyrings that I kept from a young age. I don't often add to it anymore but if I get keyrings as a gift I will keep them and add to it. Also if I've been on a particularly nice trip I will often buy a souvinear type keyring to add to it.
3) Coins/currency - one of my current favourite collections- this one I'm currently actively working on. You may even call it a "special interest" as I do a lot of research online into limited edition coins. I am particular interested in the London Olympics 50p coins currently (although don't have many) and I keep any other coins (which aren't of the common type you see that often, as obviously that's for spending :P ). I also have a £100 pound coin in mint condition from the royal mint (unfortunately I don't actively pursue those coins as I can't afford them, but I got this as an 18th birthday gift). Also have a second royal mint coin, not in packaging etc. as it used to be my grans. I also have two special Scottish notes - £1 note and this limited edition £5 note with a golfer called Jack Nicholas on it. Aside from the special coins etc. I do collect foreign currency- euros, USA cents, and have some Turkish lira currency from when I went there on holiday (aged 8). I shall stop blabbing as you all probably find this boring....
4) Healing crystals - I have about 50ish healing crystals. I don't personally use them to heal but enjoy "sensory time" (another aspie trait lol ) looking at in detail and feeling them. Also interested in their properties, I have an encyclopedia on them and am actively seeking them (I wont bore you with the info). Found a cool shop in my city which sells them, and I treat myself to them every so often. So yes I love healing crystals in more than one way. I also have a few stones I though were cool , which I got from the beach (I found a love heart shaped one!!!!). I also have a special interest in psychics (my dream to see one, but haven't), mediums, and related stuff. I have a cool book with things like palmistry, dream meanings etc in it. I would love to learn how to read tarrot cards one day, but from my book it seems more complex than I thought. I used to watch psychic TV every night when it was on freeview for a year (until they took it off the freeview
5) Science - especially biology and some chemistry too (also love maths). - I mostly pursue my love of science at university, I get a lot of enjoyment from it. Biology is my favourite- I especially enjoy learning about the human body, organs etc and how they work. The highlight of my university work and experience was doing research for my first report (on Vaccines). As a likely Aspie, I just got so absorbed in it, learning about vaccines. Despite depression and MH issues, going to the library and doing research often distracted me so much so I'd forget about everything else. I am studying a BSc (Hons) in Biomedical Science at university, which I am really enjoying - I just passed my first year and am so excited for starting second year!!
6) NEW HOBBY
7) NEWish hobby- Jigsaws
Thats most of what I can think of. I may post some pictures of my hobbies,collections etc. later (not that anybody cares, I just want to share though :P )
And that is:
The USA- as much as I would love to go to the USA (its my dream), I do call it a special interest as....... I have done a lot of research into American brands- I'm a bit obbsessed- I look on wikipedia and look into different brands and compare them to UK brands.eg. did you know colgate and palmolive are part of the same company. I enjoy going into american sweet shops and look at all the exports- they have so many flavour varieties of brands we get in UK but much more than us. I also enjoy comparing "American English" to "UK/British English" e.g. garbage can instead of bin, and different spellings eg. color vs colour. I still do the research but not as often as I used to.
Oh and as a dog lover, I also have a bit of an obsession with dogs. I talk about my dogs a lot, and am intrested in learning about dogs. Plus I love doggie cuddles - personal space is a big thing for me, I don't like getting touched by strangers (I do like some expected hugs from family and friends now but thats it) - I curl up on buses to avoid touching people etc. and also I often need alone time- BUT the exception to that is my dogs- I love doggie cuddles and the dogs are the only people (correction living things) always welcome in my room- I dislike people in my room (including parents), as that's my space. Also the dogs are always welcome to spend time with me, unlike people (I have limits to social communication, although I do and can enjoy it within those limits).
Feeling a bit sad now as I told mum about elastic band thing (thought I'd give it a shot) and got the response "is that your OCD? Why would you want to do that, why not take up a normal hobby such as crocheting". This is what puts me off being me. I don't care if you think I'm weird but please don't make mean comments
(Note I don't have OCD, and there is nothing wrong with having it but my mum always makes comments about me having OCD