Everand Logo

Welcome to Everand!

  • Discover millions of ebooks, audiobooks, and so much more with a free trial

    From $11.99/month after trial. Cancel anytime.

    We're Lost! - A Story of Autism
    We're Lost! - A Story of Autism
    We're Lost! - A Story of Autism
    Ebook144 pages2 hours

    We're Lost! - A Story of Autism

    By Gianni Papa

    ()

    Read preview

    About this ebook

    A unique story of autism, where the autistic child is not only the central character but also the narrator and the witness to a harrowing sequence of events.

    In WE’RE LOST an autistic child tells the story of his difficult birth, the “very good” and terribly optimistic neuropsychiatrist, the diagnosis by a specialist Catholic clinic, the broken dreams of rehabilitation, the clash with reality, the disappointment.

    The most authentic novel ever written about the plight of families with autism.

    LanguageEnglish
    PublisherBadPress
    Release dateJun 9, 2018
    ISBN9781507129180
    We're Lost! - A Story of Autism

    Related to We're Lost! - A Story of Autism

    Related ebooks

    General Fiction For You

    View More
    View More

    Related podcast episodes

    Related articles

    • UNLIMITED

      The Reason I Jump

      Feb 25, 2021

      The Reason I Jump
      2 min read

    • UNLIMITED

      My two FAMILIES

      Jan 2, 2020

      Like every other adopted person, I have always struggled with my identity, wondering whether I was a product of nature or nurture? Would I have been a completely different person had I been raised by my birth parents? I loved my adoptive parents dear

      4 min read

    • UNLIMITED

      Acceptance Needed For Those With ASD

      Apr 3, 2021

      APRIL marks Autism Awareness Month and director for Action in Autism, Kirsten Miller, said while awareness is needed, respect and acceptance of those with neurological differences is also needed. “Autistic people have called for neurotypical people t

      2 min read

    • UNLIMITED

      Out Of The Woods

      Nov 25, 2021

      Out Of The Woods
      10 min read

    • UNLIMITED

      My One And Only

      Jan 27, 2020

      My One And Only
      4 min read

    • UNLIMITED

      Where the Wild Things Should Be

      Mar 13, 2020

      Where the Wild Things Should Be
      6 min read

    • UNLIMITED

      Tots Gone wild

      Jan 4, 2020

      Tots Gone wild
      4 min read

    • UNLIMITED

      Accidental killers

      May 12, 2021

      Accidental killers
      7 min read

    • UNLIMITED

      Welcome To Grandparenting School

      Feb 23, 2022

      Welcome To Grandparenting School
      5 min read

    • UNLIMITED

      Welcome to Parent College

      Mar 14, 2016

      Welcome to Parent College
      16 min read

    • UNLIMITED

      Speech Deficits Don’t Explain Tantrums in Kids With Autism

      May 3, 2017

      Speech or language impairments may not be the cause of more frequent tantrums in children with autism, a new study suggests. Children with autism experience more tantrums than children without, and speech and language problems often take the blame fo

      2 min read

    • UNLIMITED

      40 And Free

      Aug 13, 2021

      40 And Free
      7 min read

    • UNLIMITED

      Kind Of Blue

      Jul 4, 2021

      Kind Of Blue
      10 min read

    • UNLIMITED

      Is Autism More Common That We Thought?

      Jan 4, 2018

      The number of children in the United States diagnosed with autism spectrum disorder may be significantly higher than previously thought, a new analysis suggests. The analysis of data from the US Centers for Disease Control and Prevention (CDC) sugges

      2 min read

    • UNLIMITED

      Restrict And Control

      Nov 17, 2021

      Restrict And Control
      5 min read

    • UNLIMITED

      How ‘Safety First’ Ethos Is Destabilizing US Society

      Aug 14, 2019

      Amid external threats and an expanding definition of safety, observers are encouraging people to take control of how they perceive their environment.

      7 min read

    • UNLIMITED

      Fear Itself

      May 1, 2019

      Fear Itself
      6 min read

    • UNLIMITED

      Weird Dreams Decoded

      Nov 19, 2021

      Weird Dreams Decoded
      2 min read

    Related categories

    Reviews for We're Lost! - A Story of Autism

    0 ratings

    0 ratings0 reviews

    What did you think?

    Tap to rate

    Review must be at least 10 words

      Book preview

      We're Lost! - A Story of Autism - Gianni Papa

      Any reference to real events, people,

      actual experiences or conversations is purely coincidental.

      BEFORE

      ––––––––

      I am an autistic boy and – even though I can talk – I can’t talk.

      I can repeat things. I can repeat whole sentences from cartoons, word for word. I can make the exact same noise as Pingu when he makes his beak into a trumpet. I can tell you my name and where I live, but I can’t talk.

      When I was tiny my parents didn’t realise there was anything wrong, since I’d had a difficult birth they just thought I was a bit odd and would get over it sooner or later. I can’t remember what the problem was when I was born, but – from what I’ve heard – I died. I came out of mum’s tummy, I died for a bit and had to go into intensive care.

      So did something happen inside my head? I don’t know. I just know that I’d died for a bit and then – for a long time – I felt really tired and confused.

      Mum and dad were always told that ‘it wasn’t due to perinatal suffering’. They were told that ‘within the framework of autism spectrum disorders, the emergency caesarean delivery can be considered an incidental finding’. They were told they should sing, dance and light a candle to the Virgin Mary since, according to my medical records, I had stopped breathing for a few minutes but – in spite of everything – I was still a normal child.

      I was treated by a very famous paediatric neuropsychiatrist, who still works with the neonatal intensive care unit. He was a man who appeared to be very good at his job. My mother would say to my father He’s very good, you know. My father would say to my mother He’s really very good, you know. Everyone in the neonatal intensive care unit would say He’s very good, you know.

      Mum and dad didn’t really understand what was going on. I was their first child; so, if they heard people say He’s very good, they believed it. In fact, they even repeated it to others: He’s very good, we’re lucky to have him looking after our little boy... They could have given us some second-rate doctor. But this doctor’s really very good. Fantastic! He’s a really good doctor! It takes a very good doctor to treat a child that has had problems at birth, but miraculously suffered no consequences. We really should light a candle to the blessed Virgin!!!.

      The good doctor had said so. They trusted the good doctor.

      And so, since nothing had happened and life could go on as normal, because we had been granted a miracle, that’s just what my parents did, carried on as normal, more or less.

      More or less, because a birth in the family will always turn everything upside down.

      As far as growing was concerned, I grew.

      I didn’t grow evenly though: I seemed to have some kind of problem on my right-hand side. I always slept with one arm stretched out to the right, my head was always turned to the right and mum was worried that I’d get bedsores on my right side.

      Or was the problem on the left-hand side and that’s why I always went right? Oh I don’t know!

      What do I know? I didn’t understand. My brain was like the brain of a newborn: a confused brain that’s not been properly made yet...

      When I was still very small, they enrolled me full-time at the local nursery.

      Mum and dad both worked, they were teachers, and they often had to work in the afternoon, but they always left me at nursery until 4 pm, even when they weren’t working.

      For them it was normal to leave me at nursery. And besides, all the doctors who’d been involved in my birth, including the good doctor, said that nursery was just what I needed, that I really must go.

      The good doctor even went so far as to say The child still has a few problems, but he’ll get over them. If someone were to give you a knock on the head what would happen? Would you recover immediately??? Perhaps after a few minutes you’d be able to get a few words out or to move around a bit, but to recover completely takes a lot longer... Having to interact with children of his own age will do him the world of good. His hypotonia will disappear: he’ll be able to communicate, express himself... he’ll soon be up to all kinds of mischief!!!.

      The good doctor was really good at reassuring my parents. And he reassured me just a little bit too.

      What did I know about autism? I was just a kid.

      At nursery, it didn’t take long for the teachers to work out that I was odd. They looked at me and they said to each other: how odd! Then they spoke to mum and mum said she thought I was odd too. But she told them I was being treated by a neurop­sychiatrist who had said not to worry, because I was developing well, I was doing exceptionally well at catching up with the various stages of development and I was well on the way to being normal. The neuropsychiatrist had said that nursery would be good for me, and mum was confident that the teachers would do wonders for me.

      I lived in my own little world as I repeated in my head, and out loud, expressions picked up from who knows where. I wandered around repeating disjointed words and performing illogical actions, I completely ignored my peers.

      The nursery’s psychologist saw all this and asked to meet with my mum. And then with dad (but he never came).

      Mum had already realised that I was autis­tic. It didn’t take her long, it never takes mum long to work things out.

      Mum understood that – if I hadn’t had problems – it would have been easy to connect with me. Instead, she didn’t know which way to turn to get into my head: she didn’t know what to expect from me and she didn’t know how to talk to me.

      Mum was scared and confused, but she was comforted by the fact that the good neuropsychiatrist had told her that it was only a matter of time before all kids got better.

      Madam he had said Before long, you’ll look at him and say to yourself ‘Son, you couldn’t talk until you were 4 and a half, now you’re neurosurgeon’... Trust me, it’ll be fine!!!

      Mum went to see the nursery psychologist and told her:

      I’m afraid my son is autistic

      The psychologist gave a filthy laugh Iiiii­iih. I heard her because I was in the other room with the other kids who were playing while I tormented the wheels on a toy car, trying to decide whether it was better to eat them or to spin them until they screamed for mercy.

      I stood there, ignored and watched by the teachers/assistants. I stood there, all lopsided and leaning just a little to the right, or was it the left? Anyway, I heard that laugh.

      After the filthy laugh, the psychologist said What an earth are you thinking? Autism? What makes you think he’s autistic? I’ve been watching your son, I’ve seen how he plays in the middle of the other kids. He doesn’t play with the others, no, but that’s because he’s still little. But his motor development seems quite adequate and is developing constantly

      My mum was glad to hear all of this, but – in her heart of hearts – she was convinced it wasn’t true.

      If the truth be told, we have noticed a sort of barrier continued the psychologist As if your son were locked inside a shell. This shell is mainly made up of incomprehensible sounds and random words. Your son sings to himself, he repeats expressions from cartoons, he repeats fragments of words he’s heard who knows where, but although I wouldn’t expect him to be part of the conversation – because he’s still too little – he’s not even part of the action, part of the game...

      Mum sighed forlornly.

      So he does have problems then!

      The psychologist shook her head. I wasn’t there but – even amidst the chaos of kids throwing their Lego bricks at the wall – I heard the flap flap of the psychologist’s head as she shook it.

      Listen said the psychologist Have you been fighting with your husband, in front of your son? Do you argue often?

      No, mum and dad didn’t argue. They had argued when I was born, because I was born ill... and my grandma had started to cry. She had cried more than the doctors had run around trying to save me. She had cried and she had shouted:

      This is the third dead baby in my family! Before I was born my mother lost my brother. It was many years ago, during the second World War, but we were happy – in Zurich – carrying on as usual. Then my sister-in-law, my husband’s brother’s wife, lost another baby. That was two... Now my daughter’s lost a baby... So that’s three.

      Mum hadn’t lost me. I was just a bit dazed. I had been swimming quite happily in my amniotic fluid until that morning, not a care in the world, when – all of a sudden – she couldn’t feel me moving in her tummy anymore and began to worry. But she hadn’t said anything to grandma because grandma would have started crying.

      She had told dad, when he got home from school. Dad hadn’t had a permanent teaching position: he had been filling a temporary role until the position could be given to a permanent teacher, when – out of the blue – a teacher had turned up, one that was just above him in the ranking. And dad had lost his job.

      I don’t think dad ever regretted losing that post and being made unemployed, because it meant he could be there for me when I was born.

      The situation was complicated: I was born in Busto Arsizio, near Milan, but they had immediately taken me to the intensive care unit in Varese, about 20 miles away. Mum, however, had stayed in Busto Arsizio and they hadn’t let her go with me.

      So dad had had to go backwards and forwards for several days between our house, Busto and Varese, driving like a maniac, risking accidents and speeding tickets.

      But I can’t know that. I can’t talk and I was particularly

      Enjoying the preview?
      Page 1 of 1