Not being able to accept myself — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Not being able to accept myself

Indigo191
Indigo191 Community member Posts: 4 Listener
edited August 2020 in Autism and neurodiversity
Hello Everyone, 

I would not normally open up like this but I feel like at the moment I need to because I feel very alone in this issue. I found out that I could have Aspergers 3 years ago and I have been fighting ever since to get a diagnostic assessment through the NHS (I cannot afford private I'm afraid) which I have been waiting three years for and will have to wait another 2-3 years because I have recently moved areas. I don't know if any other people feel like this but I don't feel like I can fully accept myself without knowing If I have it for sure. When I say to people or my employers that I could have it, I feel like a fraud and it makes me feel very insecure and makes my potential Aspergers feel like a heavy burden rather than a positive thing in my everyday life, even in the littlest things. Although I know there is something different about me, having traits like special interests, sensitive to noise, smell and touch and routines and doing the online tests, I still feel like I need to have a diagnosis before I can feel comfortable in myself and accept myself for being different and celebrating that fact. 

I just wonder if anyone else is in this same predicament on this forum or feels the same way. It would be nice to feel less alone in this situation because although my friends and family accept me, I don't feel like I can accept and love myself. 
«1

Comments

  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hi @Indigo191 and a big welcome to our online community.  I think you were very brave to open up and post about your feelings as I know that can't have been easy.  

    We have lots of other people on the forum who have Aspergers who I'm sure will be along to help you and speak about their experiences too.

    Although I don't have Aspergers, I understand the need to have a diagnosis to make your impairment feel 'real' and substantiated by medical professions.  The waiting period can feel a bit foggy and makes you question yourself so it's unfortunate you have to wait so long :(  In the meantime, try and focus on your qualities, like you say you have unique characteristics that I particularly am envious of! No-one else is like you and that is your strength.  Know that you aren't alone and we are all here to support you if ever you are feeling wobbly.  

    How are you feeling today? I hope you have a nice Sunday.
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    edited August 2020
    This doesn’t address your particular concern but one aspect you mention.
    Sometimes it’s difficult to actually love yourself I find, but what I do find possible is to be my own best friend. That is sometimes I find myself in a particular situation and quite indecisive about what action to take and I simply ask myself ‘what would I advise my best friend to do?’ I become my own best friend in other words. Usually this helps.

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

  • Rechnin
    Rechnin Community member Posts: 89 Courageous
    @Indigo191

    I just had to post a reply to this as I feel in the same situation as you and undertsand how yoy feel. Most of my life I have bounced in and out of work but have had a couple of job which have lasted a couple of years or more. My current job is the longest I have ever been employed but the last few years have been a bit of a mini hell.

    In school I regularly struggled unless I was interested in the subject that was being taught, I could barely write until I was in my mid-20s and this hindered my development. The only things I was any good at were sports and I was told I would never make anything in these as I ran "funny" and "Didn't join in." which to the football team I played for meant not chasing anything in a skirt and getting drunk after each match. I never really did any paid work until after my second spell in college where I got basic Math and English as well as some typing skills, though i did pass the hardest subjest I have ever taken and secured a GCSE in Geology.

    My work life has been a regular period of bouncing from one role to another, rareky last being a few months or less, but, there have been a few roles which has been 3 years or longer until I came to my current position which is the longest I have stayed in work.

    I did the same role for 2.5 years, sorting 6,000+ items or post each day and distributing them, ordering from storage and sending confidential documents to customers and even helped out with basic IT, ordering stationery and stock taking as well as some queue wotk, Then, about two years ago, they brought in stats and accuracy rates.

    That is when I began to struggle, I kept getting pulled in to meetings, and was eventually put on a FLP and then a PIP which I am still techincally on 2 years later. I started to try and argue my case and even pointed out inequalities on how things were marked and graded, but, nothing changed until I was in a meeting where it looked like I was going to loose my job. At some poiint I basically blurted out "Dont you think my learning difficulties might have something to do with this". I don't think they believed me and honestly think they only sent me for the OHC review to prove I was trying to make an excuse.

    When the tests came back they found I had Dyslexia and Dyscalculia, and right at the end of the report they advsied that I should be screened for Autism. They also noted that these elements would be contributuing to my low mood, anxiety and stress. For a time, it was like a sudden awakening and things seemed to fall in to place and make sense.

    The problem is, I am still awaiting my Autism screening, and what if it comes back negative? My work have reduced my targets and given me extra time to work but are still piling the pressure on which makes my Double D symptoms worse. Even more annoyingly, they have offered to wipe the slate clean if my dignosis comes back positive! However, I am now stuck between a rock and hard place as to wether I can last that long in this role, epsecially after recently have a minor heart incident brought on by stress but I also don't want to go back to bouncing from role to role like I did before.

    I hope I have not ranted too much, or taken away anything from what has been said before, but, I wanted to given some background as to why I feel the same way as Indigo191. I feel like a fraud if I say that I am Autistic without a diagnosis and it would almost be like a safety blanket if it was to come true, I don't want it to be an excuse, just for pepole to understand there are things I am always going to struggle with, especially in a pressured, stats environment.

    I find it hard to find positives and feel like I dont contribute to society when i want to do as much as I can in a role I can succeed in, like I was at the beginning of my current employment.
  • Onye
    Onye Community member Posts: 7 Connected
    Yeah I have a stutter and it’s hell on earth. Employers put the phone down on me when I get stuck on words, even the bank has hung up on me numerous times. The rejection is unreal. The worst part of it is, it’s a disability that hasn’t yet been recognised and there’s basically no support out there for it. I’ve been told I can’t claim benefits unless im fully dumb, it’s only classed as an impairment which is unfair as there are different levels of severity and support. people like me have no-one and it’s tough
  • Awesomelorenzo
    Awesomelorenzo Community member Posts: 114 Connected
    How I would look at it is you are who you are. Whether you want to label yourself or not, it doesn't change who you are.
  • Awesomelorenzo
    Awesomelorenzo Community member Posts: 114 Connected
    @Rechnin
    I also ran funny at school. Could you have Dyspraxia as well?
  • Indigo191
    Indigo191 Community member Posts: 4 Listener
    @Rechnin

    Thank you for sharing that. I know that couldn't have been easy but I'm glad I am not the only one in this position. It makes me feel less alone which means a lot. I also have been diagnosed with learning difficulties. I have what they called SPLD (Specific Learning Difficulty) which means I have traits of Dyspraxia, Dyslexia, Dyscalculia, which is also common in people with Aspergers too. I doubt myself on a regular basis now. My parents and friends keep telling me, does it matter if you have a diagnosis or not but it still matters to me a lot. I am tired of feeling drained thinking about why I feel different to everyone else. I keep question my traits, for example, my special interests, I could bore someone and have done to death about air crashes and which airline operates which planes but could that just be knowing a lot about something. As a student I struggled a lot with socialising because I wasn't what you called a convention young student, I didn't go out to nightclubs during freshers week because I could take being around too many people and could not take the loud noise but I keep doubting myself thinking is that just me who just didn't want to go out. When I go somewhere I have to plan ahead so much to a point where when I am flying somewhere I look into the actual aeroplane it's self, where it was built and what engines it has and This goes on and on every day during my daily activities, I question is it a trait or is it just me. For example, there is a hair salon where I work and the smells coming out of it are so overpowering for me it makes me feel so sick but is it me or does everyone feel like that to a certain extent. 

    Sorry if I have dragged that along but that's what goes through my brain every day now. I am sorry that you're employers are treating you that way. You should have a case for unfair treatment. Maybe you could look into that? but thank you again for sharing your story. 
  • Indigo191
    Indigo191 Community member Posts: 4 Listener
    @Onye

    I know how you feel. I have a stutter too and it can make you feel very insecure most of the time :(
  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    Hello there and welcome to you I just wanted to send you my thoughts . I was diagnosed with my mental Illnesses and even till now I dont want to accept the diagnoses . I was faced at one point to go down the private route but also cant afford it unfortunately I had to get really sick in order to get help I would say compared to alot of people with mental illness I do have good health care support now but didn't for many years so I can relate to you .  
  • Rechnin
    Rechnin Community member Posts: 89 Courageous
    @Rechnin
    I also ran funny at school. Could you have Dyspraxia as well?

    Oddly enough, I don't think I was tested for that. but. I oftren walk in to things, have poor coordination and miss things, like picking up the item next to the one I wanted.
  • Rechnin
    Rechnin Community member Posts: 89 Courageous
    Indigo191 said:
    @Rechnin

    Thank you for sharing that. I know that couldn't have been easy but I'm glad I am not the only one in this position. It makes me feel less alone which means a lot. I also have been diagnosed with learning difficulties. I have what they called SPLD (Specific Learning Difficulty) which means I have traits of Dyspraxia, Dyslexia, Dyscalculia, which is also common in people with Aspergers too. I doubt myself on a regular basis now. My parents and friends keep telling me, does it matter if you have a diagnosis or not but it still matters to me a lot. I am tired of feeling drained thinking about why I feel different to everyone else. I keep question my traits, for example, my special interests, I could bore someone and have done to death about air crashes and which airline operates which planes but could that just be knowing a lot about something. As a student I struggled a lot with socialising because I wasn't what you called a convention young student, I didn't go out to nightclubs during freshers week because I could take being around too many people and could not take the loud noise but I keep doubting myself thinking is that just me who just didn't want to go out. When I go somewhere I have to plan ahead so much to a point where when I am flying somewhere I look into the actual aeroplane it's self, where it was built and what engines it has and This goes on and on every day during my daily activities, I question is it a trait or is it just me. For example, there is a hair salon where I work and the smells coming out of it are so overpowering for me it makes me feel so sick but is it me or does everyone feel like that to a certain extent. 

    Sorry if I have dragged that along but that's what goes through my brain every day now. I am sorry that you're employers are treating you that way. You should have a case for unfair treatment. Maybe you could look into that? but thank you again for sharing your story. 

    I see a lot of what you have said in myself, but, for me, it used to be trains and is now history/gaming. There are a lot of things that are tied in to people with such issues and many of them can make other symptosms/issues worse or lead to new things. I recently found out that the Triple Ds can also be associated with mental ilness, often as a root cause, but also Autism/Aspergers and even phsyical issues like Ehlers-Danlos and stomach issues.

    As for diagnosis, I think it is important as it gives you some clarification of what might be going on with me, that I have things to deal with and hoe that people should see this as it is and offer some acceptance. But, its often leads to a knee-jerk reaction ranging from "You're just idle/uselss!" to bending over backwards and covering you in bubble wrap.

    I stress a lot about time as well. Perparing for interviews used to kill me as I would rerearch for ages and even go out to the place a couple of times to ensure I knew where I was going. When the day came around, I'd set off way to early to ensure I get there or I'd get massively stressed if was running late. Becuasse of this I have changed my start time at work SO many times.

    I never really enoyed the whole going out thing, it was expecially hard at colelge and when I played football, I still do team gatherings but tend to keep with the people I know or want to be with.

    It would be ideal if I could find a job which went around things I enjoy and researching, I assume you could do the same with aircraft and flght companies.

    Mmm... funny you should mention smells and sensory issues as these are something I have come to recognise recently myself. I hate sudden bnags and loud noises but love listening to thunderstorms after the first few rattles have passed. Slammed doors and bangs freak me out, it has to be somerthing about 'sudden' noise. As for smells, I have come to recognise certainb smells and emtions or reactions and I can often pick up 'strong' smells. I work a lot with glue making models and have found some very hard to work with due to the foul smell, but, one I use smells of nail polish, which i oddly like.

    You are more than welcome to drag things out as long as you wish in here, I do not thing anyone will be bothered at all and, as you can see, I have.

    Sadly, looks like things might moving on at work, dont feel suppoorted by my union and seems my boses have ER in their pocket.

    I have bored you all enough now.
  • Rechnin
    Rechnin Community member Posts: 89 Courageous
    cupcake88 said:
    Hello there and welcome to you I just wanted to send you my thoughts . I was diagnosed with my mental Illnesses and even till now I dont want to accept the diagnoses . I was faced at one point to go down the private route but also cant afford it unfortunately I had to get really sick in order to get help I would say compared to alot of people with mental illness I do have good health care support now but didn't for many years so I can relate to you .  

    Sadly, again, I think this is a common theme that thimg have to be all be lethal before anyone will do anything wheras certain trigger words or phrases and Doctors/Employters fall over themselves to help when they could have just helped from the start.

    I hope no one takes this the wrong way, if so, I apologise in adavnces as I do not wish to trigger anyone. But, I am back home after last week I was going on my lunch and I said "I am going to go and play in traffic for a while" and I was laughing and joking about it, as it had been a **** morning. When I came back from lunch I was taken straight in to a meeting to find out what was wrong. This is 9 months in to a down turn that was caused by work, are they trying to help or cover themselves if something was to happen?
  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    I suppose we don't know what their motivations were @Rechnin, but did anything good come out of the meeting? Did you agree on any ways you could work together to make work more manageable for you?
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • Rechnin
    Rechnin Community member Posts: 89 Courageous
    I am hoping this will all come up on Tuesaday when I have a meeting with my TL.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    Good luck for Tuesday @Rechnin! Let us know how it goes. And sorry I didn't make the connection between this post and your other post.
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    Hi @Indigo191

    Just an update Asperger Syndrome ceased to be a diagnosis a few years back, it is no High Functioning Autism as part of Autistic Spectrum Disorder (ASD)
    have a look at "A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis" 
    https://www.frontiersin.org/articles/10.3389/fpsyg.2015.02024/full 
    Some of the issues you and others in this thread have mentioned can be some of the multiple issues that can combine to be part of ASD..
    Such as Dyslexia which is a man made problem and has 3  possible underlying cognitive cause - Auditory processing Disorder, and or Visual Processing Disorder, and or Attention Deficit Disorder (which is a subtype of ADHD). you could have a look at my PubMed Dyslexia research paper collections listed here
    https://www.evernote.com/shard/s329/sh/b7ee9497-d963-4b30-a328-0d7b087e0d09/2f19fea1f77027b91566b316fb1989f0 
    I also have a Dyscalculia collection at
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/10034902/public/ 
    Being over / under sensitive to sensory issues is part of Sensory Processing Disorder (SPD) 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/10634081/public/ 
    and being sensitive to sounds can be part of Hyperacusis 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/40813338/public/ 
    Dypraxia was renamed as Developmental Coordination Disorder back in 1994, you could have a look at
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/11232220/public/ 
    and some mentioned Ehlers-Danlos Syndrome (EDS) 
    https://www.ncbi.nlm.nih.gov/sites/myncbi/1v9jzpUc5t6/collections/41047603/public/ 

    I have Auditory Processing Disorder, a listening disability, which is also the underlying cognitive cause of my dyslexia symptom (not being cognitively able to process the gaps between the sounds that the letters in a written word represent). I have problems processing what my ears hear including all sound based communication such as speech, which makes following conversations difficult, and problems following multiple verbal instructions.
    I have problems with larger groups more than 2 or 3 people as i am not able to use my visual coping strategies, lip reading and reading body language for more the 2 or 3 people at one time, which makes socialising a real problem especially with those who do not understand my communication limitations. 
    I have recently created a new Evernote web page to help explain my Auditory processing disorder issues "Auditory Processing Disorder and Some Related Issues"  at 
    https://www.evernote.com/shard/s329/sh/be9fe329-b4c9-410b-aa54-b3068d4105e7/64cf37b4b9e217a2b2d52e125a9db6c4 

    Hopefully you may find some of  this information useful 

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I hope it goes well tomorrow @Rechnin. :)
    Scope

  • newborn
    newborn Community member Posts: 832 Pioneering
    @Dolfrog thanks, if anyone knows, you do.
     A couple of years back, a t.v. series challenged inventors to make something useful for various disabilities,  tailored to one user. One was a tiny  camera in the back of a cap, because  the user needed to walk along a pavement-less road (to the pub) and couldn't hear traffic behind him. Another was something possibly just adapting ordinary itablets.  The screens of a group  (in the pub) around a table showed not only subtitles, but the name and signature colour of each speaker.  Extraneous noise was selectively  filtered out.  At the time, I thought that would be useful for half the population because so many are deaf, and the rest are, at times, in need of noise reduction for a quiet chat, and / or of written translation, to second language or just to subtitles.. 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Rechnin, how did things go today?  :)
    Scope

  • Rechnin
    Rechnin Community member Posts: 89 Courageous
    @Chloe_Scope

    Hit and miss, to be honest.

    I brought up my concerns, which they quickly brushed over and moved on to what they wanted to cover, which was  what I wanted to do going forwards, work from home, in the office or a something in between. We then filled in a survey as to what was in place to be able to do this, which seemed odd as I have already been doing this for 23 weeks! The survey was full of pointless questions.

    We went thought all this and my TL ended by saying "Well, I will put through your request and we will see if it is accepted".

    So, I am still no further. Hoping doctor will be better tomorrow. 



Brightness