Published on 12, July, 2020
45+ years of agony, private, unseen, masked
45+ years of sorrow, hidden, ignored, ridiculed, laughed at
45+ years of abuse, physical, verbal, psychological, emotional primarily by family members, but also by others including sexual harassment and assault on numerous occasions
45+ years of deliberate isolation, constructed and perpetrated by family
45+ years of being told there was something wrong and to behave properly
45+ years of thinking, and trying, over and over again to solve a problem that was not my own, but in fact other peoples
45+ years of instinctively knowing that what one was told did not fit with how one thought
45+ years of speaking a different language, of not being listened to, of not being understood, of being told that all the problems experienced, including abuse, sexual, physical, psychological, exclusion, ostracisation, was because it was invited
45+ years of suffering in silence
45+ years of lying, masking, pretending, fitting in to make life easier for others
45+ years of physical illness and struggle, anxiety, panic attacks, panic disorder, insomnia, exhaustion, burn out, failure
45+ years of being a failure yet trying so hard to get it right
45+ years of fighting to have some small piece of peace
45+ years of no support, no reassurance, no understanding, only loneliness
La doleur exquise
Now the reason as to why all of the above has occurred, and is continuing, has been identified.
It took a counsellor (paid for privately by me) two sessions to start to have a suspicion. He said three words in particular that stood out to me. On the basis of those three words, I started researching - I'm very good at finding the solution to the problem, its a gift, people who know me laugh and joke that I am like Sherlock "hahaha, Ferret's brain." It took me less than 15 minutes to find information, though that was not easy to find as needles in haystacks rarely are. Upon assimilation (reading, comprehending, understanding) this information, the revelation was instantaneous; the implications excruciating, horrifying, traumatic. Suddenly everything made sense. All the reasons why, all the times I had asked "why?" and no-one had the answer, were answered. All the suffering came into focus under the lens of reason, under the logic of mutual exclusivity. So did the implications, the damage, the cost, the price, of what people have done - my family in their deliberate intent, and also others, the apathy of bystanders, teachers, doctors, etc. over the years... is....
Irrespective of this revelation I remain alone. Still. Unsupported. Fighting again - a metaphorical parallel to incidents in youth in a playground with everyone standing around whilst I fight to protect myself and had my hair ripped out, and then later in life abuse, assault, riducule, bullying - please refer to the list above which is not exhaustive....
I now have to fight to be validated ie diagnosed. I have to decide whether I want to put myself through the trauma of being referred AGAIN to the local authority health board - the previous experience was traumatising and humiliating - and I am not the only one who has had an experience like this with this service, there are many, many people - several people including my counsellor know the problems with this service - and I have to go through that again???
I have to go through that again, fight again, for someone else to tell me what I already know? Because I'm not qualified to validate or qualify myself? Hm....
There is something wrong. There is an error in the system.
I put this here, this proposal, this supposition: There is something intrinsically wrong in the attitude, the pervasive conspiracy of silence and collusive behaviour by professionals, teachers, etc. regarding the issue of Autism, and towards the people who suffer this in silence and thereby go undiagnosed.
As a test case, I am.... I have no words... PERFECT? An exemplar of HOW WRONG things are the way they are set up...
I am bereft.
I could've had a life.
I have fought every day of my existence to have a small modicum of quality of life.
I am so tired of not being listened to, and of people NOT LISTENING.
And I am fed up of people virtue signalling - so don't even think, if you are reading this, of leaving a (patronising) comment the likes of "oh you shouldn't have experienced this." or "It doesn't have to be like that." Do you think, for one moment, I am not intelligent enough to know that? And no, that's not anger speaking, that's truth, harsh, blunt truth.
It should be enough for a person to know themselves well enough to validate their own status as Autistic. And for those health professionals, and other professionals in other organisations and support networds, to adopt the position of setting aside their professional egos, getting past their self importance, the presumption that they know best, that they are the experts on this subject - which they're not, because they don't live it every day, 24/7 - get past their conceit in their own knowledge that they think just by looking at someone a diagnostic process is complete and acurate because evidence of speech or written ability is enough to class someone as "NORMAL", etc. etc. It is not! And instead work to support those individuals who come to them for help; to help individuals seek the truth, and to put the individual first. Most of all TO LISTEN, to observe, to take on board what autistic people are saying because they know the subject best, they live it.
No one should suffer.
No one should live a life of persecution, and sorrow.
No one should live in fear, and humiliation.
This all but conspiracy of silence in any other wordes surrounding Autism, and people on the autistic spectrum who go undiagnosed, or misdiagnosed for so long, has to stop. It must stop. It must be prevented from happening in future. Women particularly who have this, the attitude to whom is appalling. I am appalled.
Autism needs to 'come out'.
Mutant and proud - to coin a phrase.
The fact this is classed as a Disorder is wrong, morally and ethically. Attitudes need to change - and don't any one of you if you're reading this think for one moment that attitudes are okay at the present, they're not. They need to change fundamentally, at every level of society. I am talking about peoples lives here, the damage that is caused by complicit ignorance, and prejudice.
Perhaps then, people like me, who through no fault of their own, will be able to save themselves. Give us the information. Give us the tools. Stop obstructing, and the obstructions.
In the meantime I will continue to fight, on my own, because there is no-one else who has my best interests at the forefront of their mind, or at heart - and no, I don't have a personality disorder before anyone wonders on that front, that's been checked out, which is a miracle considering what I have experienced. I am instead, logical. I need to protect myself from my own family, legally and emotionally - a fact which, in itself, is staggering in its implications. I face so many other challenges - homelessness being but one, is always there like the sword of Damocles; my ill health due to the strain of 45+ years which have taken a toll and reduced me to a heap of bare functionality.
I will speak out about this now, to everyone I meet. And if they find it uncomfortable, hearing or reading, for the truth is; I will think about the discomfort I live under every single minute of every single day - and that includes physical pain - and I will no longer remain silent.
I will no longer mask.
What happens next, will be history....
Dear Cirlbunting
I will not give nor offer false platitudes along the lines of "you are very brave". Whenever anyone says something like to me it always 'feels' false in sentiment. Instead I shall say I hear you. I too, remain full of questions, but one has been answered, and it is this: who am I? I no longer fight, for want of a better word, to put right a wrong that is, in essence, not wrong - or recently discovered has a label of 'disordered'. Instead, I now /move/, a step sideways from off a path that was never my own but which I was told I should follow as that was what was expected, and that's what people do, and that's how one must behave and...
So I have stepped sideways; and I know for sure, because it is the only truth, that whatever that small, tiny little part of me inside, that part that no-one can see and no-one can hear, that remains silent and masked, and observant... that part of me is okay, and I no longer censor that. It is a small voice, and it is learning to speak. That is identity, it is my own and not an unfinished jigsaw that just about passes for an estimation of, at least one, mask to wear in public.
I too am solitary. I live alone. I am alone. It is my nature. I am peaceful - and I believe we are peaceful creatures in essence. Being the other side of a computer screen is easier for me because the screen is an intermediary, it is a safe conduit through which I can communicate and interact - online is in fact is where I first discovered that I had a voice of my own, in the secret quiet and unobserved clandestine explorations I conducted, hiding away like I was committing a crime and seeing a world of social media from a distance..... Unfortunately, life doesn't have many intermediary devices, we have to go out, be in public etc. but the filters we should have which others have, are just open 24/7. The need to be alone and recharge is part of being who I am. It's just that society is structured towards a narrow bandwidth of 'normal', so anything outside of that is... stigma-laden. I feel it is time I did /my/ normal.
And there's no such thing as saying too much. Ever.
Dear Whambars
Thank you for leaving a reply.
As I read through your comments, yes, I can 'hear' similarities in terms of 'experience'/'place'.
I am still 'assimilating' information at present regarding my situation; and will decide what to do next as and when my 'Turing Machine' brain has processed.
I am increasingly becomming aware that, unfortunately, this situation of mine is not unusual. The fact it is not, speaks volumes in itself. A sad indigtment, a true reflection, of some wider and systemic cause that is not my fault, but one which I am and have been merely the victim of and subjected to.
It would therefore be illogical to assume I am alone. It is just geography that separates.
My kindest regards.
Hi Ferret
I read your post last week and Whambars recent comment this morning.
Your original post really struck a chord with me - I thought "that is me, those are my experiences, my betrayals, my pain". With each post by another person I have also read it and thought "and another me". All these stories sound like my story.
My life is a car crash and by 2012, even before I knew that what I am is an Aspie, I had made the decision that for my survival I had to cut out contact with the human world, refuse any social invitations or offers of friendship, just accept I can't do it. I am better for it. Sure the neighbours think I am a friendless freak, and business customers notice that I never talk about a private life but my life as a recluse is not just tolerable, it is the only way that a person like me should think of living. I've always been a part time recluse and the only reason its taken me 48 years to upgrade to a full time recluse is because the rest of the world was telling me that I needed people in my life.
The decision was easy to take when I realised that regardless of what society dictates it's not going to happen, not for me, not now and not ever. I am too shaped, too scarred by my experiences of an unforgiving world . I can't pass for a normal person and I am shunned for being an un-normal person. Shunned by everyone I come into contact with, whether its straightaway or weeks or months away. Eventually it always goes the same way. Its taken 48 years to accept that eventually it always goes wrong and that is never going to change.
If you can bear to tell people you are braver than me. I can't confide in people about anything let alone tell them I am on the Autistic Spectrum.. I've lived with HIV+ since being infected when I was 18 by a man who drugged me for the evening and did what men like that do. That in itself is extremely socially stigmatising. My self-shame and self-stigma is more than I can cope with. So called professionals have been appalling over the years.
And writing all this, even though my identity is private, doesn't feel like a load off my chest. As usual it feels full of questions. Have I said too much, or said it wrong blah blah.
Anyway from one unheard voice to another.....
Ferret said:Dear KillerQueen1971 "I don't think syndrome has the same negativity as having a "disorder"..."<---there is much stigma associated with terminology; historical stigma sticks. As for Autism being a disorder - no, I know I am not in disorder, but I am aware that I function differently. I like to use the analogy of a computer: my hard disk is excellent, my operating system is different to others, my input/output capacities are limited ie speech, hearing, seeing. When anyone asks, I say: I am Autistic. And I leave it at that. It is empowering to be in control and own ones own definition of self, for one's own self esteem. I call myself a Ferret! I am a Ferret! If people don't understand that, then that is not my problem to rectify. "I don't think my life story is the most interesting...."<--- your story is your own and utterly unique, there is no less value in your story, and neither therefore you as a person and an individual. Your voice is yours. "I am wondering if having Aspergers has made me more prone to abuse...."<--- I personally wonder also whether some of my experiences are a result of my condition - strike that, not a condition, make that difference. Often I think this is a result of me being of a mindset - taught and conditioned - that I am and what I say, and my views, are invalid in some way. Not being listened to, not being heard, or acknowledged, has embedded a pre-disposition in me to be subservient in certain social dynamic situations. I am working to become more mindful of that in myself, and to correct it. Having a voice improves my self esteem. If this perspective I have outlined helps, use it. Trust yourself, you know more than you think you do...
Dear KillerQueen1971
"I don't think syndrome has the same negativity as having a "disorder"..."<---there is much stigma associated with terminology; historical stigma sticks. As for Autism being a disorder - no, I know I am not in disorder, but I am aware that I function differently. I like to use the analogy of a computer: my hard disk is excellent, my operating system is different to others, my input/output capacities are limited ie speech, hearing, seeing. When anyone asks, I say: I am Autistic. And I leave it at that. It is empowering to be in control and own ones own definition of self, for one's own self esteem. I call myself a Ferret! I am a Ferret! If people don't understand that, then that is not my problem to rectify.
"I don't think my life story is the most interesting...."<--- your story is your own and utterly unique, there is no less value in your story, and neither therefore you as a person and an individual. Your voice is yours. "I am wondering if having Aspergers has made me more prone to abuse...."<--- I personally wonder also whether some of my experiences are a result of my condition - strike that, not a condition, make that difference. Often I think this is a result of me being of a mindset - taught and conditioned - that I am and what I say, and my views, are invalid in some way. Not being listened to, not being heard, or acknowledged, has embedded a pre-disposition in me to be subservient in certain social dynamic situations. I am working to become more mindful of that in myself, and to correct it. Having a voice improves my self esteem. If this perspective I have outlined helps, use it.
Trust yourself, you know more than you think you do...
True I just read it somewhere that those on the autistic spectrum were more likely to suffer abuse than others not on the spectrum, I don;t know I gather any adult on the spectrum is classed as a ''vulnerable adult'' tho I do think many of us are wise as to our vulnerabilities, and know when we're likely to be at risk of being exploited, perhaps our experiences make us wise to that. I know a number of years ago I had an e-mail claiming to be from my e-bay as apparently my bank had been in contact after I'd seemingly spent more than usual. I put in first four debit card digits, then become suspicious, and thought I'd check it out with my bank first, they confirmed it as spam. . AS regards being diagnosed with ASD, maybe ''disorder'' ''condition'' seem negative, I prefer the term ''different'' or I do think of myself as somewhat ''eccentric'', I love eccentric people. I know my mum has said I'm ''eccentric'' and I find being what I call ''normal'' difficult. I hate being in situations where I have to act ''normal'' I like your anology of a computer. I think I read something a few years ago that Mike Oldfield remade Tubular Bells as he thought the original 1973 version as ''flawed'' tho for me it's the ''flaws'' that make the album perfect, I did buy the 2003 remake but for me that isn't the Tubular Bells I know and love, OK I enjoy it for what it is, but with Tubular Bells I prefer the 1973 original, it seems to have a raw organic quality to it that I feel isn't there with the 2003 version.
Dear Ann2017
"I do not wish to be diagnosed because of all the stigma...."<---I am currently asking myself and considering very carefully how next to proceed. I will consider, and then I will make my decision. I will do what is right for me. I will ask what the benefits are for me to go through with formal diagnosis. As for labelling, I personally don't care if people label me. It does not mean that I have to wear that label. I know what I am and who I am.
"All I wish is for some support, and genuinely someone to talk to, some reassurance that I am not, in faulty, that I am just differently wired..."<---peace of mind, if I can offer anything, but peace of mind comes in knowing WHY and the reasons why. I paid for privately, a counsellor and psychotherapist as I required: a) a sounding board. b) strategies to cope with things that I thought were errors in me. It transpired I was not in error, or flawed as I had been told I was. I do not think you are faulty, if that counts for anything.
Your whole second paragraph:... I have come to the point of no longer being able to try to fit in, I am very ill, physically. There is only so much one can do, in my personal experience, to keep going, and keep masking, and keep coping. It is a false persona and state of being. Keeping up the lie is detrimental long term, in my experience. I am paying for it now. I made conscious and instinctive changes to my life, working etc, and all the time in a position of being unaware of the fact I have Autism. There are, I would therefore suggest, changes, conscious changes, one can make given careful consideration. Rather than making decisions solely by oneself, and in effect jumping from frying pan into fires, I would suggest that the most logical course of action is seek support firstly for yourself personally, and privately, and then all the other decisions about work, people, life etc, will just fall into place. I look at things this way: if not now, then when?
"I wish I wasn't like this..."<--- you wish you weren't the person forced to learn how to socialise better? who has meltdowns? who doesn't fit in? having people take advantage of your vulnerabilities? hiding yourself? working to exhaustion? avoiding being in situations of being overwhelmed? ..... The following words from two different independents helped me greatly recently, these two independents, who do not know each other, but know me, told me: stop trying. stop battling. see what happens. ........ Honestly, do what makes you feel comfortable, and don't force yourself to be what you're not.
I am hesitant to give advice, I am hesitant as everyone must find their own way and come to their own understanding of their own self and what it means to be Autistic, so please, don't think I know and have the solutions to everything. But... what else can one be but oneself?
"Far from me to belittle your sufferings..."<--you do not, your experiences carry no less validity.
Note: if you are an equal case, then mine is by definition not perfect, but merely one example, which in itself, is also of concern. Logically, there will be others.
"This needs to be an active and relentless campaign..."<-- speaking out is first. I welcome your comments and acknowledgement. I politely decline your offer of 'working on something together', and for two reasons: 1. I am not well and do not at present have the energy to engage in pursuits, however, speaking out is the way that I can contribute and is a start. 2. I am not interested in political or socio political protest; I believe a more functional process will be to engage in the manner I have. One voice will become two, will become four, will become eight....
I thank however, for your voice, here. I am obviously not the only voice.
"email address removed by moderator"<--I agree wholly with the Mod (thank you, Kerri-Mod) that it is unwise to include personal information online as in this medium. I personally would not divulge my personal information, many apologies. Perhaps a better way would be to post out in the open any ideas, contributions, etc. you may have in order to share with others. Starting a discussion thread is one way.
Food for thought perhaps...
There are, obviously, many voices out there... they will be heard...
Hi!
I find myself in a similar situation, I am afraid to ask for a doctor referral as I have known about my syndrome for about a year (as a confirmation for myself). I do not wish to be diagnosed because of all the stigma that still resides worldwide, I know that people are in fact noticing my "weird behaviour" but I just do not wish to give in their satisfaction of "labelling" me. All I wish is for some support, and genuinely someone to talk to, some reassurance that I am not, in fact faulty, that I am just differently wired.
I seriously need to learn how to socialise better, because of my work, I just don't seem to fit in any teams regardless of my struggles, I have recently had meltdowns and very sad moments due to the fact that people are taking advantage of my ways of coping with not being able to make meaningless conversation so I just hide myself in overloading my work allocation, working to exhaustion just so that I don't have to be put in the situation of being overwhelmed.
I wish I wasn't like this!
Hi Ferret and Meridiana,
I agree that no one deserves abuse autistic or not. I found out in November I was diagnosed with ASD, tho that seems to be the PC term for it these days, tho the term disorder seems to apply that there's something wrong with you, that' s why I prefer to call my diagnosis Aspergers or Asperger's syndrome, as I don;t think syndrome has the same negativity as having a ''disorder''.
I don't think that my life story is the most interesting, I hardly think it would make best seller material, but I'm wondering if having Aspergers has made me more prone to abuse , both of a sexual nature, by some boys I was at junior school with, and then by an older cousin ( I guess his thing was Louise won't tell''), and then a work colleague. I know some would bully me at work, I met my then husband to be (now ex) at work, tho that relationship turned into domestic violence. Tho my theb husband would say that he'd seen my F-I-L have fights with my M-I-L, so perhaps he saw that as ''normal'' , tho his brother never hit his wife. Maybe I'll write more when my clarity is better, but something in the OP struck a chord with me.
So beautifully, intelligently and powerfully put, Ferret! So very inspiring! I share your passion for injustice. Your experiences echo my own in so many ways, and I fully agree with your conclusion - that the system is at fault and is failing us.
Anonymous said:As a test case, I am.... I have no words... PERFECT? An exemplar of HOW WRONG things are the way they are set up...
Far for me to belittle your sufferings, but I'm probably an equally perfect case study of how VERY, VERY wrong things are. You'd never believe my story; others say it's best-seller material! It truly is horrific and nobody deserves such treatment, let alone gentle, peaceful souls with autism. There needs to be an active and relentless campaign to right all the endemic wrongs, or at least to prevent them happening again and again and again... if only for the sake of future generations. Maybe we could work on something together (you can contact me on [email address removed by moderator] if you wish). I only wish the NAS could do more.
There's so much I could say about this, but I need to digest and dissect your post, and don't have time today.
Hi Meridiana, please see community rule 3 regarding inclusion of personal details such as emails in posts. I have removed the email address in your post to protect your privacy. Regards, Kerri-Mod