Autism in Adults

Luke Beardon

• Editore: Sheldon Press
• Anno: 2021
• ISBN:
  9781529375428
• Argomento: Psychologie
• Categoria: Autismus-Spektrum-Störungen

If you've recently been diagnosed with ASD, or think you might be, or you are close to someone with ASD, one of the things you will like most about this book is the way in which it challenges the idea of autism as a 'disorder' or 'impairment'.Instead, Dr Luke Beardon will help you to reframe what you feel, and challenge what you know, about being on the spectrum. He explains how autism impacts on the individual, and what purpose a diagnosis might - or might not - serve. There is a lot of myth-busting, and dismantling of the stereotypes and clichés around ASD and areas like communication, social interaction and relationships. Practical tips for undiagnosed adults will help you navigate things like school, work, study, parenthood and even to understand what happens when autistic people break the law.
Above all, this book is a celebration of what it means to be autistic - of the passion, honesty, humour, lack of ego, loyalty and trustworthiness that make you, or your loved one, such an amazing person.

1

Introduction – where I’m coming from

Never believe anything you read about autism.

Perhaps this statement requires some justification. After all, if you have bought this book you may well be somewhat disappointed at such an opening remark; if you are in a shop trying to decide whether to buy it or not, then it may well put you off!

There is no such thing as a ‘typical autistic person’. There is extraordinarily little that can be said to be ‘true’ or ‘valid’ when pertaining to the whole of the population described as autistic. There is no ‘one size fits all’ approach, nor any description of an autistic person that will be true for all individuals. There are very few ‘facts’ about autism that are common to all individuals, and precious little advice that can be beneficial to all families, individuals, parents or professionals. Thus, everything you read or hear about autism, see on the TV, etc., must be taken with a very clear understanding that it may not be particularly relevant to you. The heterogeneity of the autistic population is such that there will be differences from one individual to the next, and what is of huge relevance to one party may have no meaning whatsoever to another. It is hugely frustrating to read suggestions that ‘the best thing for children with autism is . . .’ – or any similar definitive sentiment. What may work well for one individual could be a disaster for another. Taking this a stage further, what may work well for one individual one day could be a disaster for the same individual the next day. Such is the nature of autism.

By far the best approach (in my opinion) is that of unadulterated honesty. There will be nothing written in this book that I do not honestly believe; there may be some matters that I deliberately leave open ended, if there is no clear ‘answer’. To constantly question the validity of what is being written, and the theories and perspectives that can be found ‘out there’, is good practice. But to digest the written word without question, and then to make the assumption that all that has been digested will be of relevance to your situation, goes against the principles of this book, and I would urge you not to take that route.

Let me say a bit about the perspective from which I’m writing. My understanding of autism has come about from decades of working in autism-related fields. I have been a support worker, an outreach worker, a service co-ordinator, a project officer, a development officer, an autism consultant, a trainer, a researcher and a lecturer – all within the autism field. I am lucky enough to have chatted at length about autism with hundreds of individuals on what is often known as the spectrum, as well as parents, carers, professionals and academics. I also have several personal connections within the field. My writing therefore stems from an amalgamation of experience, learning from others, research and almost constant rumination; I do not claim to be an expert on the subject, and anyone who does is misguided (one may have a high level of expertise in the field – but that does not mean one is an expert in all things related to autism). I do hope, though, that what I have written here will stimulate thought and be of help.

What is needed when reading about autism, hearing people talk about it, or listening to personal accounts, is a conscious process of questioning and translating. The questioning relates to the rationale behind the words, the potential validity, whether or not what is being said sounds reasonable. The translating is more problematic, but perhaps of considerably more value. Translation relates to the process of taking the relevant information and making it personal – to you, your child or teenager, your employee, your parent – whoever it is that you are reading this for in the first instance. Taking essentially generic material (however specific to autism) and applying it to a given situation is crucial if one is to get the most out of the literature, the speaker, and so on. The ability to read an autobiographical account and recognize which aspects are useful and which are less relevant is a wonderful skill to have. Reading a book written by a professional and having the ability to extract meaningful material and then apply it to a given individual is an ability worth nurturing. And all it requires, really, is a little thought. A simple but effective skill – thinking.

Putting this into practice is not, however, as easy as it may sound. True reflective thought is not a commonplace activity – nor is self-reflection when related to understanding of one’s own thinking, behaving and communicating. Such introspection, however, is vital when engaging both with autistic people and with the literature pertaining to them. In other words, it is crucial to have a level of thought when engaging with autistic children and adults so as to ensure that you do not unwittingly engage in bad practice; similarly, it is important to ensure that when you are reading about autism you are not unwittingly digesting poor and/or inaccurate information. While this may seem onerous and time consuming, it is simply a fact of life; if we are not prepared to engage at the deepest level with an understanding of autism and then use our understanding to engage with the autistic population, then we must accept that we may be putting people with autism at a grave disadvantage.

Lack of understanding, and/or the lack of ability to apply good practice, will lead directly, in most cases, to damage to the individual and beyond. It is crucial that the general level of understanding of autism among professionals is as high as possible in order to reduce that risk. It is my aim to try and provide a set of words that will enable better understanding.

Everything that has been written here has a rationale. Some of it is based on research, some on experience; much of it is based on what the autism community have communicated to me, directly or indirectly. I do not claim that it is all ‘true’ – as you will see, a constant theme running throughout the autism literature is that there is very little that can be said to be ‘true’ – but everything will have a rationale. This rationale is always up for debate, of course, but I aim to be as clear as possible. To avoid narrative interruption I will try not to constantly write ‘in my opinion’ etc. – but of course, everything I write will be my opinion.

Terms and conditions

In this book, I means me, the author.

We is society in general.

You pertains to autistic readers.

There is a plethora of terms within the autism field that purport to ‘describe’ the autistic individual. Here are just some of them (in no particular order):

•autism

•Asperger syndrome (or Asperger’s syndrome)

•Kanner’s autism (or classic autism)

•autism spectrum disorder

•autism spectrum condition

•aspie

•on the autism spectrum.

The autistic person is a person who is autistic. Whether this should be what defines any individual is very much dependent on that individual him- or herself; certainly, being autistic will play a huge part in influencing that person’s being simply because it is neurologically his or her cognitive style. Who is to say whether autism plays a bigger part than the myriad of other factors that influence human beings? Again, it will differ from one person to the next. Am I a person with tattoos, or a tattooed person? It doesn’t really matter one way or the other, but I certainly should not be defined solely in this way. Am I often described as such by those wishing to latch on to an obvious (for the most part) aspect of me? Most likely, yes. It would be ridiculous of me to be offended in any way; I am, after all, someone who has tattoos. It is when people start to judge based on how one is described or how one presents that the offence is committed. To judge people in any way because they are autistic – that is the offensive act. To make assumptions simply because someone has a diagnosis of autism is where one goes astray. To be absolutely clear here, I am not making any connection between having tattoos (which is usually a choice) and being autistic. I am simply using tattoos as the analogy, in that one should never judge a person because he or she has a tattoo, in the same way that one should never judge a person because he or she is autistic.

The most recent research, conducted by psychologist Professor Elizabeth Pellicano in 2014, suggests that within the autism community the preferred option when identifying someone with autism is to refer to the person as ‘on the autism spectrum’ – however, individuals often prefer the term ‘autistic’ when describing themselves. And yet, some would argue that ‘person with autism’ is preferable to any other term. There is much debate over whether ‘person with autism’ is problematic in relation to ‘autistic person’, and this is an instance of the whole ‘person first’ language debate.

The basis of the argument is that ‘autistic person’ suggests that autism is an intrinsic aspect of a persona, but that ‘person with autism’ implies that the person is an individual first and that the autism is somehow secondary, or an ‘add-on’ – which from my perspective is clearly not apt. However, both arguments can be embraced for different reasons; some may feel that autism is so much a part of who they are, of their very identity, that anything other than ‘autistic’ would be meaningless; others may feel that the fact they are autistic is almost incidental to how they identify themselves. For some, it simply comes down to preferred linguistic style.

The reality is that the arguments can be incredibly important for a significant proportion of the population, but for many it comes down to individual preference. Those who do feel strongly about it tend to feel very strongly about it; others are more ambivalent. Within this text I will use both terms; I believe that autism is an intrinsic aspect of a persona – but I also believe that the impact of being autistic can (and does) change quite dramatically dependent on the environment (this does not mean that I believe a person’s autism will change – just its impact).

In terms of which phrase to use on an individual level within practice, it’s perfectly appropriate to simply ask the individual or parent which term they prefer. What is not acceptable is to impose one’s own view on an individual for whom it should be a personal choice. It is the individual’s prerogative to describe him- or herself in terms which suit that individual.

Autism or Asperger syndrome? High-functioning autism? Or what?

The next aspect of terminology I want to deal with is that which refers to the various diagnostic terms that litter the textbooks and diagnostic manuals. Let’s take the easiest first – you will not see autistic spectrum disorder, autism spectrum disorder, or autism condition used within this book. Autism is categorically not a disorder or condition, in my view, so those terms are out. I have also tended not to use the term Asperger syndrome (AS), despite its common usage. This must in no way detract from the sense of identity that people with AS will have with the term itself, but in essence I believe that the term autism can be used perfectly adequately to cover people with AS. This is hugely problematic as a result of history; historically, AS has come to be viewed as autism, but without an associated intellectual learning disability (there are all sorts of technicalities here, and many papers written about the perceived differences between autism and AS).

The idea that ‘people with AS have average or above average intelligence’ is one that has often bemused me. I am perfectly happy to accept it as a valid concept, but am concerned about the implication – that in relative terms, people with a diagnosis of autism as opposed to AS do not or cannot have average or above average intelligence. As far as I am aware, there is nothing to suggest that autistic people are any less intelligent than anyone else. In reality, what appears to have happened is that those who have a co-morbidity with a learning disability end up with the diagnosis of autism, and those without end up with the diagnosis of AS. This is misleading – autism, with no co-morbidity (i.e. without an additional, or co-morbid, mental health issue or learning disability), has nothing whatsoever to do with levels of intellectual ability, as many of my autistic doctoral students will attest.

High-functioning autism (HFA) is another term rife with ambiguity – or even inaccuracy. Experience shows that many people who have been given the diagnosis of HFA are, in reality, far from being ‘high functioning’; intellectually there may be clear evidence of functioning at a high level in demographic terms, but this does not mean that the individual does not require support. In some cases individuals deemed ‘high functioning’ require very high levels of support, ironically enough to enable them to ‘function’ on a day-to-day basis.

Learning disability or learning difficulty?

While I’m on this subject, let’s clear up the terms learning disability and learning difficulty. What follows is simply my version, for the purposes of clarity. For too long learning disability and learning difficulty have been used synonymously – which only ends up confusing the issues. Accuracy of terminology can be extremely important, simply so that all parties have a mutual understanding of what is being referred to. A learning d...

Indice dei contenuti

• 1 Introduction – where I’m coming from
• 2 What autism isn’t (and a bit of what it is)
• 3 Social relationships
• 4 Echopraxic behaviour: ‘masking’ and being a good actor
• 5 Anxiety
• 6 Sensory profile
• 7 Diagnosis, identification and understanding of self
• 8 Academic study
• 9 Employment
• 10 Close relationships and parenthood
• 11 Contact with the criminal justice system
• 12 Celebrating autism