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Hi, I'm Violet, ask me questions about ASD

VioletFenn
VioletFenn Member Posts: 124 Pioneering

Hi, I’m Violet. My youngest son has High Functioning Autism and I was diagnosed with Asperger’s Syndrome in my forties, so I have plenty of ASD experience! I’m a freelance writer - my article, ’Things you should never say to the parents of an autistic child’ is still one of the most-shared items ever on the Metro.

I am also diagnosed with Generalised Anxiety Disorder, which I manage through a combination of meds, humour and downright bloodymindedness. 

Ask me questions about parenting autistic children, anxiety disorders, living with high functioning autism and being diagnosed with ASD as an adult.


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Comments

  • dogloverhexagon
    dogloverhexagon Member Posts: 2 Listener
    Hi Violet, thank you for your post on late diagnosis. Can you tell me how long I put had to wait for the assessment and whether there is any way of speeding up the diagnosis. Many thanks.
  • VioletFenn
    VioletFenn Member Posts: 124 Pioneering
    Hi @dogloverhexagon In all honesty, it really is a 'how long is a piece of string' kind of question! Every NHS area has a different way of routing people through the system and some, unfortunately, have barely any adult diagnostic pathway at all. Your best bet is to speak to your GP first and ask them to refer you for assessment. Or get in touch with your nearest local ASD support group - even if they only usually work with children they'll almost certainly have some ideas of who you can talk to. Some areas have a particular consultant who sees adults for ASD assessment as a matter of professional interest - it might be worth asking the support group if they know of anyone. 

    If I'm honest, the only way I've ever heard of anyone speeding up the process is by going private - it's definitely an option to consider, but costs vary wildly, depending on where you live. Sorry I can't be of more help!
  • MrsLogic
    MrsLogic Member Posts: 42 Connected
    Hiya

    Can I also assist?  The timeframe from speaking to my GP about my suspected Asperger Syndrome and actual diagnosis was a whopping eighteen months!  In the interim I had a private diagnosis, paid for via work - both occured within a month of one another and I had two diagnoses!  I can therefore that I'm 100% aspie!
    Jo, aka 'Mrs Logic'
    <a rel="nofollow" target="_blank" href="http://faspie.blogspot.co.uk/">http://faspie.blogspot.co.uk/</a>

  • Fundamentalist
    Fundamentalist Member Posts: 133 Courageous
    Hi Violet, from Fm. I would like to ask you have you ever heard of a condition now known as misophonia or 4S syndrome, ( Selective Sound Sensitivity Syndrome ) which is often possibly wrongly diagnosed as Asperger's syndrome as I have been but I think it's more like misophonia. I have met several mental health professionals including some who work in the ASD field and they have never heard of misophonia which I think they should as they more than almost anyone really need to. See my other post on "Misophonia and severe heat intolerance". In my experience of misophonia or whatever it is that I'm stuck with it's FAR worse than the descriptions of it elsewhere online and in the articles that have appeared today on the BBC and ITV news pages. Fm.
  • VioletFenn
    VioletFenn Member Posts: 124 Pioneering
    Hi @Fundamentalist

    Yes I've heard of misophonia, but only this week after it was discussed in the media! Obviously sound sensitivity is often part and parcel of ASD (I myself struggle horribly to hold a conversation if there's a radio on in the background, even if it's quiet, and I cannot bear the sound of fluorescent lights!), but 'true' misphonia sounds like a completely separate issue and one that must be very difficult to live with.

    Interestingly, several people I know have confessed to feeling physically sick at the sound of certain noises, since the reports this week - they'd all clearly assumed they were alone with the problem up until now!
  • Anonymous123
    Anonymous123 Member Posts: 27 Courageous
    Hi Violet.
    Everyday I got told I was ugly from 3 years up to 16 by several kids and several times.  I was made to feel no one could ever want me.  
    I'm 27 now and I also have Aspergers. I was diagnosed at 21.
     I have never been on a date or had a boyfriend or anything at all and I've tried asking a couple of guys out but they said no.  Sometimes I think I look alright, but because of this I feel hidious everytime I go out and still haven't found someone.  Everyday I still cry about it and it's really hard to take in that I'm just going to be alone all my life.  I won't ask anyone else out now because I just don't have any confidence or self esteem whatsoever.  
    I also cannot tell if a guy likes me or not, so if there are any guys reading this, if you like a girl just tell her!
    I feel like no one could ever like me though.
    I am a really nice person and I'm kind and honest and I would always be true, but it's just not meant to be.
    I still don't think it's right to bully someone because they are ugly though.  I have felt like committing  suicide a few times.  The only thing that helps me is prayer and hope.
    Do you have any advice on how I can tell if someone likes me.  I mean you have a son, so you must have a husband/partner.  How did you know he liked you and how did you deal with it?
  • [Deleted User]
    [Deleted User] Posts: 210 Pioneering
    The user and all related content has been deleted.
  • davidj49
    davidj49 Member Posts: 63 Courageous
    @Anonymous123 I too have Aspergers(late formal diagnosis), and I used body language books when I was a teenager. A couple ofromance/flirt tips for you, they may blush, and will act shy around you. I too cannot tell if someone likes me, and this is the reason I have no friends.
  • Anonymous123
    Anonymous123 Member Posts: 27 Courageous
    @davidj49 I have some friends, but I am always worried about what they are thinking about me.  I am always worried I am annoying them.
    @mumof3boys Yes I was quite tearful when I was typing it, as I am not usually open with my feelings, but I really want advice.

  • Anonymous123
    Anonymous123 Member Posts: 27 Courageous
    @Fundamentalist I suffer from Misophonia too, I can't stand eating noises, or lip smacking noises, or when people use their tongue to get stuff out their teeth.  
    Or when someone loudly sucks a sweety, I actually feel like strangling them! But people get annoyed if you ask them too stop doing it, or chew with their mouth closed and if I put my fingers in my ears, or leave the room.
    Surely they would rather that than me wanting to murder them? Very annoying.
  • davidj49
    davidj49 Member Posts: 63 Courageous
    I also suffer from other's noises and had to tell a few to stop it. But is probably best to leave the room or building. There is therapy out there for misophonia.
  • Anonymous123
    Anonymous123 Member Posts: 27 Courageous
    @davidj49 I looked it up and it says there's no known cure.  I suppose a therapist could help though 
  • davidj49
    davidj49 Member Posts: 63 Courageous
    Yes, there is no cure, and a therapist will certainly help you, I gave up trying to get therapy,  i avoid people as much as possible to stop the symptoms of misophonia kicking in.
  • Anonymous123
    Anonymous123 Member Posts: 27 Courageous
    @davidj49 what noises do you struggle with?
  • VioletFenn
    VioletFenn Member Posts: 124 Pioneering
    Hi @Anonymous123

    Bless you, it's so hard isn't it? I do understand how difficult it can be to figure out social interaction - I spent most of my school days trying to be friends with people and just getting insulted or mocked in return. I know it sounds trite, but things really DO get better as you get older, because you learn to know yourself more and are less likely to tolerate being treated badly. 

    I've literally 'learned' how to cope socially - I still can't read people's faces or cues half the time, but I mentally remind myself to smile / stop talking to allow them time to speak, etc. 

    As for thinking you're ugly - well firstly, beauty is definitely in the eye of the beholder and you almost certainly are nowhere near as unattractive as you think. Regardless, looks REALLY don't matter - people like other people just because they like them, it's as simple as that. If someone doesn't want to be close to you because they don't appreciate your looks then you probably shouldn't be with them anyway.
    For what it's worth, I have a terrible time with figuring out what I actually really look like - I know this sounds stupid but I'm convinced I look a bit like a man. I know I don't 'really', because people have told me so over the years. But however much I tell myself that I scrub up okay and however much effort I make, I still see a manly face in the mirror. It's a kind of body dysmorphia I guess. 

    There are some great books on learning social interaction when you have Aspergers, I'll try to find you some links. 

    Violet
    ASD advisor, Scope
  • bendigedig
    bendigedig Member Posts: 254 Pioneering
    Hi Anonymous 123,

    im a 43 year old man, im married aand have an 11 yr old son.  Both he and I have an Aspergers diagnosis.

    when I was a kid my family was quite poor.  On the Dole in Thatchers Britain eating egg and chips everyday.

    i never realised that people were so judgmental then.. As a consequence I had a lot of bullying in my child hood.  I was always dressed in "bad clothes". You know hand me downs etc.  Some of the stuff used to belong to my older sisters!

    in addition, i became FAT.  REALLY FAT.  I hated brushing my teeth, so they were always all yellow and cruddy and my breath stank.  I had very low self esteem and i felt stupid.  My parents loved me and cared well for me with the limited resources they had but they were a bit clueless.  I looked a sight!   Iwas fat, ugly, smelly and i wore **** clothes and shoes.

    somthing weird happened one day.  At about the time when I was going to High school, one of my bullies pushed me too far!  He used to name call me, punch me, kick me, spit at me etc.  I used to just take it.  I used to " just take it" from a lot of people.  Well one day I just snapped,   I launched at him (poor sod).  By the time I had finnished he was a bit bruised and very upset.

    im not condoning violence in any way whatsoever.  However from that day forward I learned somthing about "control".  It wasnt the fact that I had bettered him.  It was the fact that I had taken control that was important.

    much of our relationships are unfortunately about control.  This is very complicated for me to get into and there are a lot of subtlties to all of this but suffice to say I began to realise that I could controll my own life.  I didnt have to allow people to control me.  Gradually I began to change.  I wanted to present myself better.  I realised I could joke and contribute to discussion etc.  Before I had never known this part of me! Yeah, I still stuck out like a sore thumb, it didnt matter any more though because I had discovered a readybrek glow from within.  I began to understand myself better and soon so did other people.

    yes somtimes it is important to submit to the control of others but often it is very very important to resist the efforts of others to control us.  Its all very subtle and a little bit complicated somtimes but what Im suggesting is that you start taking steps to control your life.  You seem to be a sensitive, intelligent person.  Just sit down and start thinking about what youve got to offer.   I bet there is a hell of a lot more that you thought there was. :)

    when i finally learned to deal with bullies (it was still difficult, but i learned how to be courageous and master my fear). I began to realise that i had more about me than I ever realised.

    where am i going with this?  Well, i never really got over the scars of my childhood thouroughly enough for me to have relationships with girls in my early and mid teens.  I did not feel atractive, i knew there was somthing different about me and I knew other peopke knew it too.  I felt very awkward and unattractive.

    Dont be overly concerned about your looks.  As long as you stay clean and bright, keep a smile on your face and try to look your best you will always be best fixed to meet people.  What they make of you is up to them,  its not up to you.  Stop being concerned about whether they like you or not.  This confidence will show.  Try not to try to hard too!  I think its cool that you asked some fellas out, good for you :)  just pick the right ones in future.  Be a bit more selective, if you dont want to fail then dont pick fellas that you think that you are likely to fail with?

    it wasnt until I left home at Eighteen that I finally began having relationships with the oposite sex.  Each success I had made me feel more and more confident.  I met my wife when I was 19.  We are stil together now :). It hasnt been easy and I still carry a few metaphorical battle scars from my struggle with life but I have changed a lot.

    in essence, im trying to let you see that there are others out there that struggle too.  You are in no way alone.  Also, Im trying to tell you that if you believe in yourself then you will have more success in your endeavours with the oposite sex.  People feel comfortable around those who are confident about themselves.

    it doesnt matter what you look like... In fact. I bet you.... The more you stop worrying about what you look like and the more you start celebrating who you are the more positive experiences you will have.  It wont happen over night.... But make a contract with yourself,  promise yourself that you are never going to allow yourself to feel bad about who or what you are.

    i am almost certain that you will start to enjoy your life more..  Dont get trapped in negative spirals of behaviour or emotional response.  Quickly you will learn to become more dynamic and people will notice this...  They might even find it a little bit unsettling at first :)

    please dont think that I have all the answers or indeed that any body does!  Peopke do care though.  Not everybody is a hurtfull uncaring mouth noise maker;)

    keep your chin up and put your best foot forward.... It really does help.  

    Thanks for sharing yourself with us :)  its really nice to hear real stuff from real people :).  I know what its like to feel so sad.  Try not to go down that path, it doesnt help.  Talking is always good though :)

    Im a great believer in the old, "there is special someone for everybody".   Be patient and keep the right attitude and you will get there :).  I know rejection hurts...  Ive been in tears plenty of times in my life but you know what,  you learn from rejection so its not all bad:)  just dont dwell on rejection and negative thoughts.

    good luck :)

  • VioletFenn
    VioletFenn Member Posts: 124 Pioneering
    Ohhh what a fabulous response, @bendigedig - it's so good to hear from people who've been there and done that!

  • bendigedig
    bendigedig Member Posts: 254 Pioneering
    @VioletFenn

    nah,  never been there.  Done some stuff but never that.  I hope that Ill get there one day though :)

    I think its important that we all try to help each other.... Dont you? :)
  • Anonymous123
    Anonymous123 Member Posts: 27 Courageous
    Thanks @bendigedig for the great advice @VioletFenn thank you too, I will have a look at those books and from your pic, you do not look like a man, but I know what you mean I have weird thoughts about what I look like too.
    For instance sometimes I think I look like a frog lol

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