If we type, “What is autism” into Google, we will probably see the standard list of symptoms, diagnostic criteria and articles on what to do if your child has autism. The headline descriptions and information about autism on most websites may be technically correct, but to get a true picture of autism, we need to dig a lot deeper.
From a diagnostic point of view, everyone-myself included, has to display a specific set of symptoms in order to be considered for an autism diagnosis. The one big fact about autism, is that no two people on the spectrum, are exactly the same. This means that the support required to enable someone to achieve a reasonable quality of life, will always be unique to that person.
As I've said before on this subject, the majority of autism advocates and speakers I've listened to, are indeed experts on autism, but they are only experts on their own variation of autism. Their specific challenges are not necessarily mine. Therefore, much of the advice given out by the growing band of autism ambassadors, does not relate to me. The minute I hear an autism expert start a sentence with, 'All autistic people are.... ', I switch off immediately.
To highlight the diversity of autism, here are a few case studies
Philip is a twenty-five year old with autism and learning difficulties. Because of his physical strength, Phillip’s mother is unable to care for him at home. As a result, he has lived in a residential home for seven years with other autistic people. Whilst Phillip can hold a basic conversation, his use of language is limited. Phillip has great difficulty following instructions, and often takes up to five minutes before he is able to respond to a question.
Phillip’s challenging behaviour can result in inappropriate, and threatening sexual advances to female members of staff. He has severe deficiencies with Social Imagination and can get angry when he is unable to communicate effectively.
He enjoys Ten Pin Bowling, watching cartoons on the computer and trips to the cafe with members of the residential home's staff.
With the help of his key worker, Phillip is currently learning how to travel on the bus independently. In reality, it may never gain enough skill to travel alone.
Whilst every effort is made by staff to help Phillip attain the highest possible quality of life and independence, It’s clear that will need a permanent placement, in a specialist, residential home.
Jamie is a twenty-four year old diagnosed with Asperger Syndrome and Bipolar disorder. He lives at home with his parents and is able to travel independently on the buses and trains. Although Jamie has a well developed vocabulary and general knowledge, he would be unable to cope with any form of employment. Jamie attends a local day centre for people with autism where he is able to take part in various activities and learn social skills from a team of trained staff
Jamie enjoys Kart Racing and music. He has a great sense of humour and enjoys the company of others. At times, his co-morbid diagnosis of Bipolar Disorder, appears to amplify his autism symptoms. This results in a very high level of anxiety.
Long term expectation for Jamie, are likely to involve a need for permanent support and intervention from Social Services and Mental Health Team. It is unlikely that Jamie would ever be able to lead a fully independent life.
Lucy is a thirty-two year old executive in the financial industry. She has been plagued by bouts of severe anxiety and depression from since childhood. Along with the responsibilities of a high powered job, Lucy is a wife, and mother of two young children. Despite her achievements in life, she has always felt as though she was different to other people. At work she is colleagues call her 'aloof and too honest.' At home, Lucy's husband say's she 'cold and distant.'
During a bout of major depression, a psychologist raised the possibility that Lucy may have Asperger Syndrome. Lucy researched the subject in her usual, obsessive way, and realised that she could relate to most of the symptoms described by other females on the spectrum.
Since her autism diagnosis, Lucy is learning to understand her emotions. She is implementing strategies to improve her lack of social skills. Diagnosis for Lucy, has been a very positive experience. She is creating a social-group for other professionals on the autistic spectrum, and is writing a book about her own unique experience of autism.
Anna is a autistic nineteen-year old. She also has severe learning difficulties and epilepsy, which is partially kept in check with medication. Anna needs constant, one-to-one support so her basic everyday needs can be met. Communication with Anna is achieved mainly through sign-language and pictures. Her lack of speech creates a significant barrier to verbal communication.
Despite her challenges, Anna enjoys art, music and country walks. Staff need to be constantly alert in case Anna has an epileptic fit. She has fallen and sustained bruises many times due to her epilepsy. Anna has a remarkably positive outlook on life, and enjoys having people around her. She smiles a lot, and claps her hands whenever someone makes her laugh.
Anna is cared for by staff in a residential home as her parents could not cope with the high level of care need to support her. The severity of Anna’s complex combination of conditions is not likely to decrease and can only be managed.
Why do I feel I have a good overview of autism?
For the past eight years, I've worked as a specialist tutor for the National Autistic Society with dozens of autistic adults and children. As yet, I have not met one autistic person that has identical challenges and needs as another.
An autistic person is not just a diagnosis described in a medical text book. We also have an inherent personality, combined with learned behaviour and attitudes picked up from family, and others in their social circle. The one size fits all, view of autistic spectrum disorder is misleading, and does harm to the cause of autism awareness, and understanding.
This article wasn't meant to be a rant, although it sort of turned into one! It’s just that, as I wrote this piece, I became more, and more angry about the lazy, one dimensional, and sometimes misleading information offered up by some of the so called autism experts.
I will finish this article by reiterating, that like any other section of society, each person on the autistic spectrum is unique, and should not be thought of as little more than the sum total of an over-generalised list of symptoms and traits.
‘People with autism person are more than just a diagnosis described in a medical text book. We are unique individuals with diverse personalities’