Published on 12, July, 2020
Hi, I'm Jenny 30 year old rock music loving, crafter, hippy, scientist, biker, puppy owner.
So I would really like some help understanding Asperger's and what people tend to struggle with specifically I have been trying to read up on it but just getting lots of generalities so I think hearing from individuals would help me.
All my life I had long suspected that I might be slightly higher on the specteum than most people, I have always been proudly a bit of a weirdo. But this last year I went through A LOT just one thing after another until I got to a very bad place, I went to councelling to try and get some help where the councellor (who is not qualified for the diagnosis) told me I was Autistic and tried to push me into having a meltdown. I soon after stopped seeing that councellor as I definitely felt she did more harm than good, I have been speaking to a friend with councellling training instead who urged me to lodge a complaint against that councellor
This hit me very hard, I had just been starting to get my legs back under me feel like I was starting to function again and with this it threw me into turmoil, she recommended a book for me called "Aspergirls". Which I read furiously that week, and although some bits I could maybe see most of it didn't seem to fit. I keep trying to see if these things fit to me but it feels forced, that it doesnt fit, then I wonder if I am just lying to myself.
I yoyo back and forth between those two, and have been doing for several months now . I mostly try to just put it aside, get back to the peace I had before accepting that maybe I just think differently than other people but if I do that's OK,the world would be a boring place if we all thought the same but it's still bugging me and it would help me if people could share their experiences or point me in the direction of some more resources that might be helpful.
So why I suspected I might be higher on the spectrum than most is that I have always just felt that social things took me longer to learn than most that many things people seemed to instinctively know I had to learn by rote. Honesty is extremely important to me and I enjoy bluntness.
Nothing was ever clocked as a child, I used to talk almost non stop at home, mum always told me to be quiet. At school I was bullied and I would generally just be quiet and try not to draw attention to myself. I told my councellor how I went with the ignore them until they go away, which largely worked so I kept doing it, which I think she thought was mutism, but I have read about it and i don't think so but maybe I am wrong. But I could talk back could act, which I would do for my friends, but never anything that would exactly be called a snappy comeback I usually just made it worse for myself, it helped my friends so I would show the support if I saw it happening to them but usually just didn't bother if they tried anything on me. I truly didn't care what they thought, I thought they were d***heads so why did I care what they thought of me. So while I was scared of physical attacks and it made a hostile school environment generally trying to argue just made it worse so I didn't bother. But I don't think it was mutism (a term I only know from that book) but maybe I am wrong?
The traits I think she judged me on (I think) to me don't seem very relevant or useful. I have a strange accent, from nowhere I have ever lived (but similar to my families), I have always blamed it on my mum constantly having radio 4 on at home. I prefer comfortable cloths, which was a thing that book talked about. I am in no way a girly girl at the best of times but at that point I had next to no self confidence when it came to my physical appearance. And I worked from home alone so I didn't generally put much effort into my appearance for a councellling session. I do not cry easily, if I am in pain or suffering my first impulse is to do my "everything is fine mask", but there are some definite environmental factors which I think are the likely cause of that, very middle class upbringing where we were not allowed to be upset and other such reasons. I know when I do it, I can do it on purpose. I don't know generally still confused and doubting myself about all of it.
One of the big things for me that seems to be a key of Autism spectrum though I may be wrong is the idea of sensory overload. I do not get this, I love the wind, seeing new places, moving travelling. Not a huge fan of crowds or strangers in my personal space but I love gigs and music and dancing and moving and seeing new places and things, they are soul food to me.
Anyway long and rambly so I'll shut up but I would appreciate any advice.
Hello and welcome. I also don't have significant sensory issues, but I do have differences around focus/interest, relationships, social underconfidence, and 'feeling able to' show my true emotions, and also had bad experiences with counselling and therapy. Also grew up with a lot of Radio 4, so perhaps that's the cause...
I don't like the idea of being higher or lower on the spectrum. The spectrum is a range of traits the way Lorna Wing first described it, not of 'severity' or 'strength'. Does being high on the spectrum mean being very autistic, or not very?
Hi, thanks for the response. What do you mean by social underconfidence?
By higher on the spectrum I guess I mean more or less severly Autistic, more or less difficulties day to day. As I said I don't understand very well and would like to learn more.
Munchkin said:What do you mean by social underconfidence?
Good question. Not totally sure myself! When I was a child, people often said I was shy, and I did exclude myself or feel alienated from others. I still do feel it's very difficult to mix with people and be authentic, despite having consciously realised I need to force myself to socialise in order to get comfortable, and accept my failures. My social brain is sometimes impeded by being caught unaware, and I may be 'miles away'. I've decided to ride through any embarrassment, not care too much what others' impression is, and the diagnosis helped with that. Certainly I rarely express the thing most important to me, and asking a woman out would be a very high hurdle. Some of my main differences are 'alexithymia' (not knowing what I'm feeling) and executive dysfunction (not executing plans as expected), which may all be related somehow.
Munchkin said:By higher on the spectrum I guess I mean more or less severly Autistic, more or less difficulties day to day.
I'm still honestly curious. Which, more or less, difficulties, would be 'higher'? More, I'd presume?
People do use (misuse?) 'spectrum' to mean a continuum of severity sometimes, but I think it's better to be specific. I think of it more like this cartoon:
http://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
I suppose the next time someone tells me 'we're all on the spectrum', I can say, 'Yes, neurotypicals are quite close to the middle.' 'Aspies' are 'eccentric' (off-centre) in that sense.
Munchkin said:Thanks I'll check it out. I would love a formal diagnosis, I would really like to know. But I have very little faith in my GP to help with this and as far as I know that's the only route for a diagnosis?
It's a common starting point, the main one mentioned by NAS http://www.autism.org.uk/about/diagnosis/adults.aspx, and definitely worth a go. In most areas, any health or social care professional can refer someone to the local diagnostic pathway. It may take a few enquiries: if not the GP, try the 'Single Point of Access' in your local mental health trust and they may be able to advise.
Munchkin said:Currently my plan is, once I can, go to see a councellor who has a background in autism and ASD for women in particular if possible. While I may not be able to get a diagnosis, I would trust their opinion.
I hope you can find one, and maybe people here can suggest a way. I don't see many counsellors specialising in autism in this directory: https://www.bacp.co.uk/search/Therapists It was my poor experience with therapists that partly prompted me to go for a diagnosis. I still think the mental health professions generally have practically no understanding of autism (obviously there are exceptions, but still too few).
Munchkin said:I have been reading more and maybe something else common to Autistic Spectrum people would be exhaustion caused by social pressures?
I think of that as 'autistic fatigue'. Some people can't cope with more than an hour or two of socialising. I can find socialising helps with depression as you might expect for a typical person . It's complicated. Good luck.
Thanks I'll check it out. I would love a formal diagnosis, I would really like to know. But I have very little faith in my GP to help with this and as far as I know that's the only route for a diagnosis?
Currently my plan is, once I can, go to see a councellor who has a background in autism and ASD for women in particular if possible. While I may not be able to get a diagnosis, I would trust their opinion.
I have been reading more and maybe something else common to Autistic Spectrum people would be exhaustion caused by social pressures? That is something I have related to a lot in my reading. I found an article about burnout and that very accurately described what I felt when I had been really struggling. I knewnit wasn't depression, I had felt that before I just wasn't functioning, I could keep pulling it together for short periods if I HAD to but it was even taking a toll on my physical health too. People kept telling me I was depressed, it did become that, but I know it is different, not a sense of worthlessness, I was quite proud of kyself I thought I had handled difficult situations well, but I was in pain and just exhausted, I felt like my brain was just more and more soup, and I needed to rest to be alone. As I would for depression I kept pushing the other way, making myself look happy go out talk to people, but I just got worse. So I think that it's important to realise the difference there between burnout and depression so I can do what I need for myself. I had thought burnout was a thing neurotypical people would also struggle with though, thought I have never heard anyone talk about it in any detail so if it is a neurotypical behaviour as well I am unsure if it would be the same or past as long
Munchkin said:maybe I just think differently than other people but if I do that's OK,the world would be a boring place if we all thought the same but it's still bugging me and it would help me if people could share their experiences or point me in the direction of some more resources that might be helpful
Glad you liked the cartoon. The 'line' idea I personally refer to as a 'continuum' and the circle (or n-ball) as a 'constellation'. Yes, I've heard the idea that number of 'symptoms'/differences could be used to give some kind of level, but that doesn't necessarily correspond to 'level' of need (as in the DSM-V diagnoses) or of difficulties.
I agree with what you say about thinking differently making the world more interesting. Some people see the 'thinking differently' as the core of autism, although perceiving the world differently or acting differently can also be part of it. The UK subtitle of Steve Silberman's influential Neurotribes is 'Thinking better about people who think differently' - I found that book a very useful history of the subject.
I have also flip-flopped about the diagnosis, until identifying as 'autistic' when I heard experience I could really relate to. Years before my own diagnosis, I was actually very sceptical that Asperger Syndrome meant anything, because I'd met a few people with the diagnosis, and I couldn't think of a single thing they all had in common (indeed some psychiatrists hold that view too). Not being on the same social wavelength as other people seems a reasonable description, but that's very subjective and depends on the society you live in. Autism/AS diagnostic definitions seem to have always been based on judgements of people on the outside about our behaviour, even when their description of our behaviour doesn't match our own internal understanding of it (your 'mutism' versus 'ignoring' is an example).
Are you considering going for a formal diagnosis? If you don't feel you need so much support after the bad time, and feel you understand yourself and your differences well, which you seem to, maybe there's no point. A diagnostic summary often expresses things in terms of a score, only broken down very roughly into things like 'communication'. What I think should be standard after the diagnosis is a full set of profile tests, including cognitive and social, so someone can understand what 'autism' or 'ASC' means in their case, what works and what they need to look out for.
A tool I've mentioned here before and some people find useful is RDOS.net's 'Aspie Quiz', which has 10 dimensions. It correctly (in my opinion) identifies that I have neurotypical perception, but am neurodivergent in other ways. I do kind of think in terms of abstract ideas rather than social relationships (which actually helps me see the good in everyone.)
Yeah misuse of the word there, I meant to say lower on the spectrum. As I intended that to mean it would be high functioning, can pass or mask effectively. You are right with the cartoon, I was thinking a bit linear and the circle is more appropriate, what I guess I was picturing would be more a collection of things that you struggle with so the more differences, from Neurotypical and the more it affects your day to day would put you further along that line. If that makes sense? I'll happily admit that is likely not accurate, as I said I am here looking for more information and understanding :)