My Life With Autism

By Seamus Seeley

A Personal Autobiography of the Daily Challenges that i face living with Autism Spectrum Disorder and my difficulties with Social Skills.  I was diagnosed with  Autism Spectrum Disorder, level 1, 11 years ago, at the age of 40, by Tanya Breen, an ASD Specialist,based in Hamilton in New Zealand.

 

Autism, which is in the DSMV,  (Diagnostical and Statistical Manual of the American Psychiatric Association) is a Neuro-Developmental 'difference' that is more common amongst boys than girls.  It affects 1 in every 68 babies born globally, and ranges from mild to severe. The symptoms of autism include:  Problems with Communication and Imagination, Social Skills, Repetitive Interests/Behaviour and Sensory Issues, Difficulty with making sense of the world, literal interpretation with language.

• Language: English
• Publisher: Seamus Seeley
• Release date: Aug 24, 2023
• ISBN: 9781516384198

Seamus Seeley

I was born in Auckland in New Zealand, but was brought up in England.  Have been in New Zealand for 10 years and currently live in Wellington. I was diagnosed with Mild Autism Spectrum Disorder, a neuro-developmental disability, three years ago at the age of 40, which came as a complete shock to me but made sense.  I always thought something was different about me, but couldn't put my finger on what was wrong.  My sister first new i was autistic in 1995, but never told me.  The first time i heard the word Autism was in 1998, but didn't know what it meant.  This is my first book.

Book preview

Seamus Seeley.

Published by Seamus Seeley, 2022.

While every precaution has been taken in the preparation of this book, the publisher assumes no responsibility for er-rors or omissions, or for damages resulting from the use of the information contained herein.

MY LIFE WITH AUTISM

First edition. August 30, 2019.

Copyright © 2019 Seamus Seeley.

ISBN: 978-1516384198

Written by Seamus Seeley.

Dedicated to my family and relatives who helped me write this book!

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I thank you from the bottom of my heart! Seamus.

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PREFACE

I was born at St Helen’s Hospital in Auckland in New Zealand at 9.05 a.m. on the 21st February 1972. After spending a few years living with my parents at Wistaria Road in Hong Kong and Kilchun near Pusan in South Korea in the Far East, I came back to live in England in 1976. Being adopted in New Zealand, while my parents had been living in Hong Kong at the time, it was very much of a culture shock. I had lived with a foster mother for a few months, before being adopted out via an adoption agency called 'The Motherhood of Man.’ My parents told me that I was adopted when I was 2 years old, and it came as a complete shock to me. At first, I didn't know what adopted meant, but when I found out I was pretty upset. The reason why i was adopted, was because my parents weren’t married at the time i was born, they had just split up - which was very stigmatized back then. Also, my grandma had a part to play in it!!!!! I have Irish blood in me on my mum’s side of the family - my Grandma Doris was born and brought up in Ballyhooly in County Cork in Southern Ireland and moved out to New Zealand with my grandad, Rolfe Arthur Parkinson, in the 1930's, where she married my Grandad. The ship they came out on was called the Port Alfred, and docked in Auckland. They were in Cabin 24. Both my parents are Kiwi - my mum was born in Otahuhu in Auckland, and my dad was born at North Wairoa Hospital in Te Kopuru near Dargaville in Northland. My dad was a draughtsman and my mum was a Shorthand Typist and played the piano. My dad’s family were originally from Kidderminster in England.

My interests include Art, Music (60s and 70s Rock, Grunge, Goth), Swimming, Hiking, Camping and the Great Out-doors, Vegetarianism and environmental issues. I have been on environmental, animal- rights and anti-war protests in England and the States.

I studied a BA Hons course in Social Sciences at Nottingham Trent University in 1997, finishing in 2000, and passed 7 GCSEs and 2 'A' levels at St. Lawrence College in Ramsgate in England in the 1980s, graduating in 1991. The course modules of my Degree course were: Quantitative Methods, Sociology, Psychology, Economics, Philosophy, Politics and IT. This is my first book

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ABOUT THE AUTHOR:

I came to England in September of 1976, when I was 4 years old from South Korea. My family and I moved into a little house at 7 Hollingthorpe Road in Crigglestone in West Yorkshire. My mum was 31 and my dad

was 32 years old. My grandparents were living at 7 Hesley Road in Kettlethorpe in Wakefield just 2 miles from us. I was pretty ill with a bug I had picked up from the journey, and was hospitalized for a couple of weeks in 1973. We lived there for a few months before moving to Rectory Close in Barby in Northamptonshire in the West Midlands.

Two years ago, I was diagnosed with mild Autism. I was diagnosed by a private Specialist, Tanya Breen based in Hamil-ton, and my parents paid for the diagnosis. Autism is a neuro-developmental disorder, caused by the mutation of a cer-tain gene: CNTNAP2. The Autism gene is passed down from the father's genes, and is thought to affect more boys than girls. There are a lot of different mutations involved, and a lot of different pathways that seem to be involved with Autism. Those genetic pathways include some known to be related to learning and some linked to immune function. One in every 68 babies will go on to develop Autism, and it is becoming a worldwide phenomenon in that the number of babies developing it has increased enormously over the last 10 to 15 years. Children and adults who have an autism spectrum disorder look the same as other people, and due to the invisible nature of their dis-ability it can be much harder to create awareness and understanding.

Currently, the cornerstones of autism therapy are educational therapy and language therapy. Teacher Aides are often used. Also, marijuana is claimed to be an effective treatment for autism since 2009.

In the 1990’s there were a lot of parent-run online autism advocacy groups, that always featured images of children on their websites. They still exist today in some form or other. E.g. Autism NZ.

Autism affects different people in different ways. Some autistics score above average on intelligence tests but struggle to communicate verbally and make compulsively repetitive movements, such as rocking back and forth or flapping their hands. Autistics tend to have average or above average level of intelligence, except for those on the lower end of the spec-trum who often have accompanying learning disabilities. It is a 'difference' rather than a disability. Autism used to be seen as a 'deficit', as though something were missing. However, thankfully we are moving away from this ideology.

Autistic children often have a wretched time at school. They are 3 times as likely to be bullied as their non-autistic sib-lings. Many drop out. They are mostly educated in mainstream schools but offered extra help from therapists and teacher aides trained to deal with them. Education Authorities like this approach because it is cheaper than setting up Specialist Schools. Parents often prefer their children to be taught alongside non-autistic children, but integrating the 2 groups can be difficult.

I was also diagnosed with Benign Paroxysmal Positional Vertigo recently by my doctor using the Dix-Hallpike test, which I have had since my teens.  I get a rocking/tilted sensation 24/7, but not so often I get spinning sensations and nausea.  I have slight hearing loss in my right ear, and get Tinnitus from time to time.  The other symptoms I get include:  blurred vision, loss of balance, lightheadedness, motion sickness and unsteadiness.  I try to sleep on my back to prevent the calcium carbonate crystals in my ears from becoming dislodged and entering the semi-circular canals (it’s that that causes dizziness).

THE GENETIC ASPECT

Two studies have uncovered 60 genes that have a greater than 90% chance of contributing to ASD among 500 or more genes associated with ASDs overall. More investigation is needed to dig deeper into the roles of these genes.

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AUTISM AND EMPLOYMENT

Academic studies on global employment rates for adults with autism do not exist, but the UN estimates that 80% do not work. Job Training, Life-Skills Coaching and Psychotherapy could help. However, help that should be available of-ten is not.

The first big hurdle is the interview. Many autistic people struggle with social conventions such as making eye contact when speaking or knowing when to shake hands and what to say when greeting the interviewer. Creating scripts to ease nerves can help.

Autistic people find it hard exaggerating their abilities during interviews. There are also difficulties when at work such as ringing phones and bright fluorescent lights, which may distress or drain autistic people.

Despite these drawbacks, employers who hire autistic staff are usually glad they did. Many have strengths that make them well suited to some jobs: Updating Databases, organising filing systems and fixing computers.

Finding employment is starting to get easier for some people with the condition. A growing number of charities and businesses find work for autistic people of high intelligence: Specialisterne, Auticon, AQA, Passwerk, Kaien, L’Oreal, Harry Specters and Fruits of Employment.

Autistics are usually good at focusing. Employers also report autistic workers are reliable and loyal. Their desire for rou-tine means, once they find a job that suits them well, they rarely miss work or quit.

Because autistic people often think very literally, managers have to give much clearer instructions, and that helps non-autistic staff too.

Severe autistic kids may have fewer opportunities than mild autistic kids after secondary school. They can set goals that include finding a job, but the jobs they find may include work in supervised workshops or other areas of supported employment. However, all individuals on the autism spectrum should try to maximise their abilities, regardless of their functional capacity

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CREATING A COVER LETTER AND RESUME.

You don’t have to begin disclosure of your disability in your cover letter, just try to present your inter-ests in the position clearly and have a well-organized resume. Be sure to include references of people you know well and who you think understand your disability and believe that your disability won’t prevent you from being successful in the workplace.

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COMPLETING AN INTERVIEW.

The interview can be the most challenging part of the job search for people with autism. At the end of the day, it isn’t qualifications which are a factor as to who an employer recruits, but how well potential employees interview for the jobs.

Using eye contact and appropriate nonverbal communication (nodding, smiling, etc) can guarantee success in being recruited to a job.

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THE GUT ASPECT

New research from Utah University suggests children with Autism tend to have a less diverse population of gut mi-crobes than non-autistic children. Children with autism have no unique pattern of abnormal results on endoscopy or other tests for gastrointestinal disorders, compared to non-autistic children with GI symptoms reports a study in the Journal of Paediatric Gastroenterology and Nutrition ( JPN), official journal of the European Society of Paediatric Gas-troenterology.

Children with ASD are 6 to 8 times more likely to report gut intestinal symptoms such as bloating, constipation and diarrhea. The GI issues that come with ASD might be due to 2 factors:

a)  Inappropriate immune activation causing inflammation of the tract.

b)  Differences in the types of gut bacteria that are present.

They also have higher levels of inflammatory cytokines, which are signalling molecules that promote inflammation, such as Interleukin 5.

Also, they have lower levels of TGF beta 1, a protein that helps regulate the immune system and keeps it in check. TGF beta 1 is also known to be important in neurodevelopment.

Similarly, they have lower levels of the protein Zonulin, which helps to regulate how permeable the intestinal wall is.

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SYMPTOMS OF AUTISM

The symptoms of Autism include: repetitive or stereotyped behaviour, such as doing things in a certain order or walking to school the same direction every day; Obsessive Interests such as an interest in crosswords and puzzles, computers; Problems

with Communication such as forming words and making oneself

understood by others; Difficulty with 'motor skills' such as

using a pair of scissors or riding a bike properly; Literal

Interpretation of language and Socially Inappropriate behaviour such as resting elbows on the dinner table and not un-derstanding 'personal space' by standing too close to people when talking to them. Autistics usually exhibit facial 'tics' such as blinking and nose twitching, and other 'motor tics' such as hand flapping and twirling.

Anxiety and Depression are more common among people with high-functioning autism than they are among the gen-eral population. They are disabling in themselves. My anxiety used to be so bad that sometimes I was housebound as a result of it. Fortunately, with medication it has got a lot better.

Autism is defined as a Mental Disorder under the DSMV

(Diagnostic and Statistical Manual), the 'gospel'