The Unheard Voice

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....

Parents
  • "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... 

Reply
  • "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... 

Children
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