Luke Beardon, 2018 Updated Version (originally available 2007)
This has been updated to reflect up to date preferred terminology only.
Note: by ‘we’ (our, etc.) I am referring to society as a whole (not ‘me’).
In 1978 Lorna Wing and Judy Gould undertook the Camberwell study; following their paper published a year later the so called ‘Triad of Impairments’ was introduced, and has since been the ‘backbone’ of diagnostic criteria for autism (now trimmed down to a dyad – but essentially not a lot has changed). Their work at the time was cutting edge and seminal, influencing the way in which professionals understood the world of autism. Here we are, decades later, and I for one still come across the term ‘impairments’ on almost a daily basis. However, thirty years is a long time, and while Wing and Gould will forever be positively associated with research in the field of autism (and rightly so) surely it is time to reconsider our use of terminology that could potentially damage the very population we are supposedly trying to support?
Firstly, is autism really a disorder? For all of the arguments to say that it is, I would strongly suggest that there are counter arguments against. We are told that people with autism lack a theory of mind, executive functioning, have poor central coherence, have developmental delays in communication and social understanding. In my experience I would not contest that this causes difficulties for the individual and family. But, having said that, what about the counter-side to this: the honesty, the straight talking as opposed to making things up (or lying), the very genuine nature found in so many autistic individuals? What about all of the extraordinary qualities rife within the population, the attention to detail, perfectionism, drive, and focus? I would say that the only reason we use the term disorder is because there are more of the predominant neurotype (PNT) than there are autistics. What we should be talking about is difference, not disorder; we should be recognising that just because an autistic child develops differently it is not automatically a negative state (i.e. ‘disorder’) but a difference that needs acknowledgement. I would not suggest for one minute that autistic children/adults and their families and friends do not have daily struggles; what I would suggest is rather than those struggles being identified as the sole problem stemming from the autistic individual, we should be looking elsewhere – at the rest of the PNT population who, with the right guidance, attitude, willingness, and acceptance can change their way of thinking and behaving better to suit the autistic population.
Secondly, are we right to say that people with autism are impaired? I would argue not. Where do the vast majority of problems for autistic people come from? Other people, usually PNTs. Our lack of understanding autism directly causes huge amounts of anxiety, confusion, stress and distress to people with autism. Perhaps we should be saying that PNTs are impaired in their understanding of autism, rather than autistic folk are inherently impaired – that, certainly to my mind, would be far more accurate a reflection of reality. For example, to say that an autistic individual is impaired in their communication would suggest that the problem lies with that individual, as if something is wrong with them that requires fixing. Now consider the child who complies with what he is told (to the letter) and is subsequently admonished for doing just that. One might say that is a result of literal interpretation of language – part of the so called ‘impairment in communication’. But where is the celebration of honesty for that individual? Where are the cries of anguish over the PNTs illogical and highly disturbing propensity to say things that are not accurate, precise, or even true? Surely we should be decrying the PNT population as a bunch of liars who can not use verbal language accurately, rather than placing the blame firmly on the head of the autistic child. Rather than insinuating that the problems lie with the individual, look at the problems created by the PNT population. If I can not communicate effectively with a non verbal child, who am I to say that the impairment is with the child? Surely I am equally impaired! It is my impairment just as much as any problems associated with autism that causes those every day problems for the individual and their families.
Thirdly, I am utterly convinced that one of the best ways of supporting an autistic individual is to change behaviour – not of the autistic person but the behaviour of those around them. If the world was more organised, better structured, if people actually said what they meant, then surely this would better suit the autistic population? If we actually listened to autistic people and responded accordingly we could go a long way towards meeting need. Perhaps most importantly, if we developed a better understanding – by refusing to see things always through a PNT perspective, by broadening our minds to see things from the perspective of the individual – then we will realise that it is changes in society in general that would be most beneficial to the autistic population, rather than always placing an onerous expectation on the autistic individual to change.
Autistic individuals are not disordered (the irony with the term being that so many autistic people are highly ordered in their thinking), nor should we automatically dismiss developmental differences as impairments. Certainly the neurological complexities can be baffling to the PNT – as, equally, the PNT world may be baffling to the autistic. This does not make either or both populations disordered – simply, different. In order to support individuals we must accept that differences do occur, but at the same time recognise and accept that difference is not synonymous with disorder.
One day, with luck (and a lot of help from those who are autistic) we will see beyond our own, very narrow, view, and celebrate autism, rather than separating the population by negative terms such as disorder and impairment. Until then we should be taking a long hard look at our society, and our values.
21 thoughts on “Is Autism a Disorder?”
Couldn’t agree more, Luke!
Yes I agree too. Yes Luke, it is time to reconsider terminology. If disorder means illness (which it does) and if Autism is a neurodevelopmental condition then surely it is not an illness but a state of being since nobody knows why some people have certain specific difficulties. An illness has to have a cause else it cannot be deemed as such. I would like to suggest that in the absence of a cause of such defined difficulties, one could say that since we are ALL subject to environmental, sensory and social impacts since birth, and it is recognised that Autism is a variable condition of difficulties particular to an individual (and we could all most likely have at least a small difficulty in any of these three human particulars of environmental, sensory and social impacts which is why some very intelligent people say ‘we’re all there somewhere’) then we should indeed say that Autism is not a disorder but a difference between individuals and how they are impacted and impact themselves upon environmental, sensory and social impacts and variables. Consider also the dictionary meaning of the word Autism. Does any one else have any thoughts on this?
Sorry, “with Autism”
Which I don’t do any more – this was the original from 2007 I believe when thinking was rather different compared to today…
I just discovered this blog and my heart is beating madly. I’m reading everything as fast as I can. My older daughter is Asperger and I just want to help her, respecting her and not being invasive . Finding that balance is difficult sometimes. Thank you so much, your texts are so full of positivity and hope.
Yes Luke – and since we all vary in empathy and we all vary in ourselves in other various ways, then we are all ourselves. One must come to the realisation therefore, that what matters is not whether someone has a ‘condition’ but rather what their individual condition is. We all have an individual condition (which is OURSELVES, respectively), which is subject to environmental, sensory and social factors. The question is, what do we do with what we have? Do we push the boundaries of science with our focus and drive for the benefit of mankind? There are many people who don’t consider themselves to ‘have a condition’ yet on occasion and sometimes regularly lack respect, empathy, honesty, a supportive nature, a genuine desire to care about one’s fellow humans etc. (Shall I go on?). The term ASD is usually preferred by professionals but I would be surprised if the people they refer the term to are as keen on it. Also, is the term ‘disorder’ actually helping to assuage any difficulties individuals are experiencing? Wouldn’t it be better to acknowledge that we all vary in our capabilities and interactions with our fellow humans and to simply support one another in what we should term DIFFERENCES. If a particular person should wish people to describe them as such and such or desires support for such and such in such and such a way then that should be for the INDIVIDUAL SELF to decide and hope for. Maybe it is time to rethink the whole terminology and the words used then maybe we can move forward with getting rid of stigma, bad practice, cruelty and downright bad behaviour. When will we say ‘we are all human let’s behave towards one another as though we were one self, the best self we can be, to the best of each of our abilities’. Yes Luke, other people who do not regard themselves as having the difficulties I have, have behaved in a disgusting manner towards me (a manner in which I would not behave towards them) such as violence, bullying, ignoring, shouting deliberately, excluding etc. etc. I totally agree that society needs to consider their values. Let us not forget that the world is repetitive by nature (the planetary movements, seasons etc) and we should focus on something to get somewhere-how else can we invent things etc unless we focus and are interested in something. It is preposterous that we are still thinking in a fashion which is based on a false fallacy which may be completely accidental of course. There is always probability.
Just what are other people thinking?…..When you just walked into a room and the lights were too bright and you said so and someone says-‘go out of the room then’ and no-one else says anything, then you do go out because the lights were too bright and you feel upset because nobody seemed to care …When you were at the table eating dinner with friends or family and it took a long time to ask someone to pass the salt and pepper because sometimes it is difficult to speak and after you finally asked the question someone says (while looking at someone else across the table)-‘why are you being so passive aggressive?’. ‘What-I only asked for the salt and pepper’, I thought but I actually didn’t say anything back because I couldn’t understand how people could be so mean to me. I only asked a simple question at the dinner table…I don’t even know what passive agressive means-I am the calmest, nicest person
People should respect and stop bullying, being mean, etc. I would never bully someone. People should love each other.
Love is the answer that maybe the birds sing in another language
People who love should be loved in return…People who don’t know how to love should be loved. People who know how to love but don’t…well I don’t understand them
But I try to understand them and still respect and love because example is the way to teach people to love. Even if we aren’t perfect we can still try to be kind and not hurt people’s feelings
The answer (or at least part of an answer or maybe one answer of many) as to why we are all different-we all do different things I think. But we should all love
I just listened to your TES interview podcast from Nov 2018, and looked you up. You are an eloquent advocate but when you speak about autism not being a disability or disorder, please please broaden your frame of reference. All children/people who are neurodiverse (not only autistic) or who have physical difference from the predominant majority or any other person who could be labelled with a disability/disorder/difference ALSO easily fit into your category of people who have no functional difference from the predominant majority when the environment is suitable for their participation. This is a very important framework for teachers to get their heads around, so let’s not give the impression it only applies to autism. Doing so is actually making things even harder for people who are marginalised by the education system for other reasons. When a teacher is open minded enough to collaboratively remove barriers to participation for each student, then we really will have an inclusive mindset that is protective against secondary mental health issues that arise when students take on the shame of ‘not being normal’.
What does the word disorder mean?
What does the word order mean?
What does the word create mean?
What does the word human mean?
How do humans create things?
Humans create. They use what is available to them where they can get them from. Humans are constrained by situation and conditions. What if this planet were created originally out of things that were available only from a certain place and/or condition? There is a disorder of this planet brought about by human consumption, thinking that we are the decision makers as to whether we create chaos from a fragile world. Should humans try to use everything that is available to them?
No, that would not be wise.
When we have to feed birds because their trees have been taken away from them, disorder will ensue.
Then we will have to look after the birds when they originally used to look after themselves.
We need them but do they need us?
Did they need us when their trees were in full bloom and thriving?
Were the birds singing of love then?
Are the birds still singing of love, when we feed them rice on our rooftops?
What do birds think?
What does the word love mean?
Listen and you may learn to love if you so desire.
How do humans learn to love?
We learn to love by helping and supporting each other.
Why is every human born the way they are?
I don’t know but what I do know is that we are who we are.
Could we all be loving humans?
I don’t know.
I am myself and I am not anyone else I only know what I think.
What is a good way to live?
Learn to love,
love and be loved in return.
We should be grateful to anyone who teaches us how to love.
When we know how to love we can realise that love is eternal because we will feel the power of love and may want to
Who knows what the future encompasses?
Who knows why the universe seems infinite?
Who knows why we find ourselves together, trying to learn love, find love, keep love?
We should think when we meet another human:
‘I can love you and if you value love you can love me too. Let’s learn how to love, together’.
We can teach each other how to love.
What is love?
Is love a disorder because not everyone is particularly loving?
Imagine we are birds with wings to fly from tree to tree and sing about love.
This sentiment,-replication required [in my opinion].
*in-process discovering you/your-works
[post my-ASD diagnosis (a number of years) , and ‘just about’ accepting stuff].
Thank you very much for your ‘high-profile’ works.
(? potentially can I help your work in anyway? happy to be studied ;super complex case ‘they say’
-a not so little anymore, slightly wonky, autistic person ; very keen to learn, study, and contribute to society so to speak.
I will make contact!
Thank you for the post which I have only just discovered (my sister has just bought your book on anxiety and autism and recommended it to me – we both have young autistic sons).
Reading it gave me an interesting thought. Imagine an alternative world where we (the PNT of our current reality) became the minority in a world dominated by autistic people. Imagine how ‘disordered’ we might seem – how disorganised, anxious, chaotic. And imagine if we were expected to go to their primary schools and fit in with their world which made little sense to us. Interesting tangent I am now thinking about. Thank you!
Your information changed my life. I felt so strongly that something must be wrong with me. I have had numerous counselors tell me that they can’t help me, they actually have told me to stop coming. I had numerous neurologists that couldn’t explain my seizures. I was diagnosed at 58 years old with autism. Then I read one of your books and all of the pieces came together. I finally got some answers. I am so glad to be great at being myself. I don’t believe I have a disorder, I actually have more order than most people I know. So, thanks for your help.
That’s so great to hear!
Thank you for your clarity Luke. It has helped me immensely.