Hi, I'm Violet, ask me questions about ASD - Page 4 — Scope | Disability forum
Please read our updated community house rules and community guidelines.

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

124»

Comments

  • VioletFenn
    VioletFenn Community member Posts: 124 Pioneering
    What age were you when you were diagnosed and what triggered it ? Having just watched Are You Autistic? it seems that there may be undiagnosed parents of children with ASD. They were talking about the lost generation. 
    I was 46 and an absolute cliched example of realising I was autistic whilst going through the process for my then 11 year old son. There are so many of us who only realise when we see it happening in the next generation. Because I'm verbal and academically bright, my other problems were just ignored or put down to 'nerves' - I was diagnosed with Generalised Anxiety Disorder many years ago, but the consultant who dx'd me with Asperger's said that in his view I didn't have an anxiety disorder per se, just mental health problems caused by having lived with undiagnosed ASD for too long. 

    I actually interviewed the two main participants in Are You Autistic (link here) for Metro. I absolutely agree with the 'lost generation' theory and I honestly think that the diagnosis rates will soar - not because it's easier to get dx'd (we all know that's not true), simply because more previously hidden autistic people are pushing to be recognised. 

    Violet
    ASD advisor, Scope
  • Kirstie93
    Kirstie93 Community member Posts: 1 Listener
    Hi

    I thought I would comment here as there are not alot of people who will understand but hopefully people here will. 

    Basically I am 24 years old and I have Aspergers Syndrome. When I first got diagnosed it felt like the best thing in the world as it provided answers I never had as well as explanations I never had regarding difficulties etc that everyone else never seemed to experience. I work in within a childcare setting which at first seemed ok, but recently however that has changed, in fact alot has changed. 

    I have began to realise that despite my best efforts and trying very hard that I am only meeting a fraction of the standards all the other staff are meeting, no one mentions it or says anything but I can see it. To begin with I thought that if I acted confident then I could convince myself this would be a temporary thing and I tried this for a long while but this didn't make a difference. It was becoming more apparent that me not meeting the standards everyone else was meeting was due to the difficulties caused by the fact that I am autistic, since realising this I resent the fact that I am autistic more and more all the time. 

    Being autistic was something I was proud of and was considered a part of me but now I consider it this unwanted demon that I am stuck with for life, it manifests itself in everything I say and do I can't escape nor cure not just get rid of it. I am at a point where I go home and have meltdowns daily because I know it isn't going anywhere. I want to be able to meet standards in work etc just like everyone else more than anything but don't because I am autistic. 

    I don't really know what to think from here, there isn't anything more work can do as they have listened and tried to make the adjustments that seemed necessary or might help and it hasn't really changed anything. I just feel like I need some sort of guidance here. (No offence meant to any other autistic people from anything written in this post by the way this is purely a reflection of my difficulties and how being autistic is affecting me personally).   
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Wondering if you have any advice on getting particularly chatty children with Asd to stop and listen to others rather than monopolise the conversation or ignore your prompts to take a breath please? 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @Kirstie93 I am so sorry you are going through a tough time. Hope you get some advice here 
  • ilovetodig0044
    ilovetodig0044 Community member Posts: 3 Listener
    Hi All
    I’m new here but
    From reading the last few discussions I think I may have come to the right place!
    I am the step father to two boys; the eldest (14) was diagnosed with high functioning autism, adhd, Tourette’s and generalised anxiety disorder when very young and copes relatively well at school. 
    My wife (37) has just recieved a diagnosis of Aspergers, which was sought out because of our experience with our eldest boy, which actually didn’t come as a shock to either of us. 
    To complete the hat-trick, my youngest step son (10) recieved an asbergers diagnosis a week ago and is likely to be diagnosed with adhd as well. His diagnosis took a long time to confirm as we as well as the doctors were unsure if he was genuinely asd or whether he was replicating autistic behaviours from his older brother whom he idolises.

    Needless to say, living in a house with 3 highly functional asd family members is proving to be a challenge for us all, family dinner times are frequently taken up with 3 separate conversations excitedly interwoven together; each has varying degrees of understanding of external emotions and social signs and each has different levels of organisational and timekeeping difficulties which frequently clash. Frequently I feel completely overwhelmed and unable to manage everything at once.




  • Geoark
    Geoark Community member Posts: 1,463 Disability Gamechanger
    @Kirstie93 welcome to the community.

    If you don't mind me asking what sort of work do you do?

    I am not diagnosed, however when my daughter was being investigated for Aspergers a lot of what I was reading seemed to apply more to my own experiences than my daughter's.

    I struggled a lot during the early years when I started working, and found I was slower at learning things than others. However once I started to understand them I soon stood out. I would get frustrated that supervisors would walk past people doing nothing to ask me to do something, when I finally questioned it I was told because once they mentioned it to me they knew it would get done and when completed I would let them know. At one point I was asked if I would join a team going into a company to turn it around.

    Then my back started giving me serious issues and I was out of work for a decade. Moving back to work I found myself in an office based role and have continued to struggle - in my view. It seems to me that I continue to struggle while those around me seem to take it all in their stride. A view that my colleagues do not agree with.

    More recently it has gotten better. To be fair in the last 5 years I have been in 5 different roles, 2 years as a trainee in three different roles, 2 1/2 year as an assistant in two roles and finally the last 6 months as an officer dealing with service charges and Section 20. So moving from having general knowledge to developing more specialised knowledge and skills.

    What has happened to change is two things. Mentoring from my manager has helped me to learn how to prioritise my workload, the second was signing up with Lynda.com which provides a range of courses but in particular I have found the time management and Excel courses to be a god send. While I had decent Excel skills I always struggled with the syntax used in formulas or tracking problems. 

    While these have helped I still struggle as work and priorities are fluid. Phone calls come in, priorities can change in an instant, and deadlines can quickly come and go without a task being completed. The latter I can usually get past as I normally can gauge if I will meet the target and let my boss know so she can choose to either prioritise my time or pass on the work to one of my colleagues. But two or three days of hectic chaos can quickly change that before I realise that I have missed the target.

    That all said the biggest thing that stops me from meeting expected standards is the stress that I put myself under. It means that when I am looking at the screen I cannot understand what I am looking at, or fail to properly understand something I actually know the answer to, especially when I am on the phone to a customer. This leads to frustration which in turns means that I find it more difficult to move quickly between different tasks and this increases the frustration.

    Sometimes I can have days where I seem to get very little or nothing done, feel totally stressed out at the end of the day and my pain levels are through the roof and I wonder if it is all worth it and if I should just admit defeat and give my notice in. Thing is I know from experience that all these issues will finaly click into place and I will enjoy the challenge more. It also helps that I love what I do and they actually pay me to do it.

    You sound like you are working with a great team, and have an understanding employer. If you understand where the issues are there are usually solutions even if it is to give yourself more time. Something to remember is that teams are usually composed of people with different skill sets and knowledge. It is too easy to compare  yourself with others and see yourself falling short, but I am also sure that your colleagues see things in you that they appreciate and respect which make you a valued member of the team and to the company.

    To give an example of this my boss told me that one thing she really appreciates is that I have an excellent sh!t radar (sorry for the language) if I send her a heads up notice for something and she is not aware off she makes sure she does so when it comes up she is prepared. On the odd occassion this has happened while I was telling her of the potential problem, not much time to prepare but at least she is aware.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Would like to know do you recommend any online courses for working with children with asd please?
  • Geoark
    Geoark Community member Posts: 1,463 Disability Gamechanger
    Hi @debbiedo49 a really good resource is Autism Toolbox. It is a Scottish resource for schools but the material is free, as far as I remember. http://www.autismtoolbox.co.uk/resources/topic-resources/staff-training/

    If you are working in a school setting I would strongly recommend speaking to the SENCO regarding which  qualifications they prefer to see or if there are  ones they would recommend before paying out for courses. 

    That said there are some courses being advertised at https://www.reed.co.uk/courses/sen/online near the bottom is Teaching Assistant Course - Level 2 CPD Accredited for £19 (the offer ends today)

    Level 2 means it is a GCSE equivelant. But do take a look first as it is not autism specific.

    If it is outside the school environment let me know and I look for other courses for you.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • wanderinggal
    wanderinggal Community member Posts: 18 Connected
    Hi Violet I've been awaiting a diagnosis about 2 years been to my GP who wasn't convinced as he said I held eye contact lol which took me about 38 years to conquer the fear of doing . Just reading other comments like the 4s noise thing funny just left a question for audiologist just now motor bikes leave me wanting to hurl something at them , as I suffer with meneres disease so noise goes right through my whole being . Noise in general winds me up radios , traffic etc , anyway to my point of how can I get help and support I have 2 Asperger's and high functioning autistic teens they suffer a great deal due to myself having a neglected childhood of mum there but not present , feel I don't have a network of any sort , no family nearby , isolated and kids are not bothered by friends or going out , get very very depressed at school holidays as it's always in as I have a lot of issues going out , try to be a normal parent but don't have the skills , both kids under camhs . Not saying I want to be Mary Poppins but would be good to have the skills to help them develop and become independent . Gone through the PIP **** with one and the other just going to go through with them soon . All I wanted when they were younger was someone to teach them the skills to cope , develope and find how to socialise easier instead with my bag of **** . I feel I've let them down all because I needed someone without ASD to light a path for them . Feel like there's so much we miss out as I don't know what the magic formulae is for making friends and keeping them . Living in city is a absolute nightmare as people always say yes we must meet up for a coffee or other parents make their kids busy but never think to invite your kids . Just needed a break now and then and support as an undiagnosed ASD parent , not asking others to bring up my kids just show them the stuff I know exists to make you a little more functional and happy  but  I  don't  know myself how it works . I know people say isn't it great being different oh you are such an original thinker , that doesn't help all the years I've felt isolated and feel outcast bullied at school and didn't want the same for my kids wanted a little more acceptance and inclusion , kids are cruel and ostracized my eldest who hasn't had any friends for 7 years I don't have any I can count on either , but need to get help and diagnosed as it might help ???  Too many problems and not going to wear my finger out typing and also listing a novel of complaints as I don't want to be like this , used to be a lot less " complainy " but life to be honest it sucks . Need a bit of legal boot to get diagnosed as they said we have to assess its not your PTSD that's showing signs as if you can't have both or a barrel of problems any way lots here to digest  hope you can help 

Brightness