Ann Kennedy: The challenges of growing up undiagnosed
I am writing this article as promised to Adam for I feel it is needed right now.
Many young people are being diagnosed relatively late presentl, for them the diagnosis may be a bit frightening but this “late diagnosis” is happening at age10 to 18 years, this IS late by today’s standard but all is not lost. I was diagnosed aged 57 years! That is late – very late!
What has it been like to live a life without knowing and without the support which seems more available today?
Firstly, even by the time I was 18 in the 70’s no one had heard of the word ‘Asperger’s’ nor Asperger’s Syndrome and no one was on the look out for it among the children in the classrooms as they are today.
If you ‘hit’ 18 and were in a bit of a mess or seen as different the action taken then was: “into psychiatry you go” and not another suggestion offered nor available.
As a child I hated school with a vengeance. I was isolated and lonely and kept away from others of my age. I felt so different to my peers. I was terrified of everyone and anxiety ruled every waking hour and terror reigned at night time.
For years as a child I screamed on the stairs at home, until I was doped silly so as to get sleep and allow others to do the same. I constantly felt as thoughI was from another planet. Often wondering which one exactly! I had the added difficulty of being born with congenital rubella syndrome, which can cause Asperger’s Syndrome and I know others with CRS who are thus effected. I am severely deaf with only 30% hearing so communication was further compromised. Another factor being I didn’t get hearing aids until I was in my mid twenties.
Not all was bleak as my compensation was my imagination and I was good at being creative. Thank god for small mercies, something was there to save me! I was also above average intelligence which is very nice indeed!
I went to Art College when I left school. I had not shined in academia as the deafness and fright made me blank out. There were not many options either for children who were already compromised and families who couldn’t stretch to send all to university. By the time it came to me, the money had run out! I was ok with going to Art College but blind to knowledge and support I fared even worse here.
I was not ‘ok’ with meeting the people there. I didn’t complete the course, I ran away and fled the country to work on the animation classic ‘Watership Down’ being made in London UK, but I did return to go back and ultimately graduated with an Honours Degree. That was nice. London was such a disaster I would very willingly do a ‘Pass’ on this experience.
I was swallowed up with depression and terror, paralysed so badly that I took to the bottle and to self injury.
My self loathing was extreme.
I would not advise either as ‘coping strategies’ the first can kill you early and so can the second. I was in intensive care so many times and had two near death experiences. The cutting causes scars which then give just about everyone a chance to label you as a lunatic before you can prove otherwise. This is a barrier to ‘best practise’ if you get horribly ill physically as i did and the words of ‘ malingerer’ can now be applied to you as your constant visits to hospital seem disproportionate to age and the way you look – the scars become the grand excuse not to find out what is actually wrong – physically. I felt I had to flee Ireland and i was so ill i couldn’t walk and was in a wheelchair.
Then began the long process of learning to walk again after years of initial hell in our health system. Learning meant an early rise to take the rollator to a lonely path so no one could see me learn. Also when i found I couldn’t walk i decided to learn to drive, my biggest accomplishment for i did this at the wrinkly age of 53, a woman of re-invention many times over by now.
Lonliness was my best friend and up to the time of learning to drive I was still in the psychiatric system. Tanked to the gills with every drug known to man, I was further noted as being the silent one in the corner of every social event I was ever forced to be at. I never spoke and wished the ground would open and swallow me up (now you cannot stop me talking. I am making up for lost time!).
I sought out solace from groupies, mostly of the religious kind and this wasn’t the best thing to do in hindsight. I was very young for my age really and clueless facing people. Today, many youngsters are aware and being made aware of traps they might fall into. In the 70’s we were in the grip of economic distress and not a lot of focus was ever given over to the younger people who were preferred ‘seen and not heard’ for our time would come.
I also isolated myself further as a chosen way to deal with anxiety. I rented a small studio to which i went and worked, again, alone. Fine Art suited me and I have exhibited well and received many accolades.
This went on and decades passed, so did methods of trying to cope which inclued slashing and drinking and popping the pills, these were the times i definitely couldn’t cope with such solitary confinement. A kind of slow madness and aching to be in touch with human beings saw me contemptuous of the way I was and hating it so much. We are a social species and meant to be so.
I grasped the nettle at the age of 50 or thereabouts. My psychiatrist of over thirty years was dying and i had just got over major surgery which nearly killed me completely as complications set in. I was now becoming very ill indeed and i felt if life was to be lived at all I better do something about it.
Change came easily once I made the decision to change. The fight was hard at times, but in retrospect it wasn’t half as hard as i thought it might be, failing was not an option.
Time was running out. I needed my life – IN FULL.
My aim was to give up self injury, smoking, get off the heavy medications and to find out who i was. I did all this. All at the same time.
Today, I am who I am, a spirited lady with ‘attitude’, a strong sense of justice, and with a voice.I believe in myself and I like myself – at last! I want to try all the time, even if i make many mistakes I find the trying not so trying and I enjoy the challenge, most times.
Its never too late to learn anything – I am now at 60 learning what i should have learnt just as i was leaving secondary school or even a decade and a half before.
My journey now is to deal with severe disability.
I have a neurodegenerative disorder and muscle wasting disorder coupled with mixed connective tissue disorder. I am going blind slowly and deaf a bit quicker– both prematurely and I will end in a wheelchair. I am considered so rare that a clear diagnosis of what is wrong cannot be made. It is thought i have some DNA defect. Thankfully it is being recommended that I travel to London under the treatment abroad scheme and, God-willing, I shall be assessed by the world renowned Prof. Hanna of Queen’s Square London, if the HSE will agree to my neurologist’s wishes.
My many conditions will not stop me from experiencing life to the full.
It will not stop my challenge to improve on any rough edges to what can be a naive personality as I strive to mature and gain confidence. Nor will anything stop me as I vocalise my experience of being disabled, angered I am at times with how perception can rob one’s confidence and also deny one of equal rights.
Just as the youth of today would, by 18, understand for themselves the reason for their distress of differing communication skills, in future years but not in my time, stigma over scars self-inflicted and ever finding oneself in the mental health services will be fully understood and accepted.
There is a vast difference from being in the mental health services for the reason of loneliness and despair than being their as a person who is a severe threat to themselves or others.
My condition is Asperger’s Syndrome with ADHD so what I say to all is I am living, just like everyone else. If you meet me in the street, smile the big smile and say ‘Hello Ann, nice to meet you, are you well today?’
“Ah sure i am, why wouldnt i be?
The sun is shining and all is well with my world, thank you and thank God!”
By Ann Kennedy
Image courtesy of gubgib / FreeDigitalPhotos.net
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