This is an alternative format transcript of our online Q and A on deconstructing autism with Sami Timimi, which took place on 8 September 2016.
Welcome to our online Q&A, thank you very much for joining us. We are delighted to have Sami Timimi with us today.
We will try to get through as many questions as we can in the next hour. Your question may not appear immediately, but we will publish and answer them one by one...
Hello, I am Sami Timimi, A consultant Child and Adolescent Psychiatrist
First question received by email from Liz: Although I agree that it is important to understand the history of the autism label, do you think that there is a risk that by discussing whether or not it is a useful label, it might encourage some to believe that they shouldn’t diagnose people, which could lead to people not accessing services?
Yes. But we already have too many people labelled and numbers continuing to expand. Whilst some services may be helpful and do offer positive input (e.g. some autism outreach), we don’t know whether this leads to improved outcomes (personal, functional, academic), so just increasing the number of those diagnosed without having empirical evidence on how a diagnosis and any subsequent services offered may impact on their outcomes is not a sensible way of dealing with this potential issue. Furthermore we don’t know how many who are not diagnosed may similarly benefit from such services, given that there is nothing terribly autism specific that any ‘treatment’ has been shown to improve differentially in those so diagnosed. Having said all of that I do discuss whether certain services may be helpful and if they need a ‘ticket’ (such as an autism diagnosis) to access that then so be it, the one difference is that I explain that autism is a descriptive classification (describes sets of behaviours that often go together) but has no explanatory power (i.e. the idea that “he does this ‘because’ he has autism” cannot is not scientifically supportable.
What do you think of Gillberg’s ‘autisms’ belief?
I don’t know what you are referring to as I am unclear what beliefs you are wishing me to comment on
The belief that the term 'autism' is inaccurate and therefore 'autisms' plural is a more acceptable way of considering the condition and individuals who all present very differently.
The idea of autisms is just as problematic, as opposed to accepting we are getting nowhere with our current science while we retain an attachment to the idea that autsim or autisms will connect to any specific 'natural kind'
Do you know what autistic people make of your views?
I know some don’t like it and others are ambivalent and some are right on board with it, after all I co-wrote the book ‘The Myth of Autism’ with two people who had themselves received an ASD diagnosis as adults, so the book contained their views, many of which were more strident than mine. However, I do accept and understand that if you have aligned a part of your identity with an identification with concept that there is something specific and unique and definable about autism (hence you become an autistic person as opposed to a person with autism – as the medics might see it – or a person who happens to be diagnosed with autism as I might see it) and who has then had the experience of an empathic resonance with others who to you describe something similar about their experience, then disputing the idea that there is anything identifiably unique could feel like an attack on their very identity. I am aware of all these dangers when stepping into such disputed waters, but feel as others do that these are debates that we need to have the courage to respectfully, but without fear, be prepared to have.
Would you say the main problem with a unified concept of autism is the extreme heterogeneity of autistic people?
It is one of the many problems. The heterogeneity problem means the diagnosis by itself tells you very little about the person, their context, their needs, capabilities, strengths etc.
Thank you for the questions received so far, please keep sending them in...
Do you think the concept of neurodiversity offers more fluidity between conditions and diagnosis?
Yes and some people find this helpful and enables a greater acceptance of a difference perspective which is more empowering to people given (or who could be given) the label than the ‘disorder’ perspective. I have recently had a very informative exchange of views with someone who identifies with the ‘autism’ idea but sees this as part of ‘autism cultures’ where he and others in the neurodivergence way of thinking have helped create positive spaces for a more empowered and positive view of those differences. Were we ‘diverge’ however is that I see the neurodivergence view as opposite side of the same coin of the neuro-disorder view in locating the ‘source’ and potential focus to internal/biological factors that impinge on relations with others and the world and as a descriptor both difference and disorder views have huge problems with heterogeneity to the point where it is impossible to get a ‘operationisable’ and reliable description that marks out something specific that enables us to know what ‘thing’ we are talking about and ‘who’ we are potentially talking about when we discuss autism.
I am not sure I understood your response to Kerry? Please could you clarify?
Simply that 'autisms' will have all the same problems as 'autism' (e.g. what are they, how do we define them etc.)
The blurb above says you argue " the autism label has developed as a result of ideological changes rather (than) scientific discoveries" and you mention in a comment below that autism is not a 'natural state', can I infer then that you support the notion of a looping effect in autism?
Yes (I presume you are referring to Ian Hacking's idea about how looping in dicourse leads to a cultural embedding of an idea)
Another question by email: People on the spectrum are more frequently being diagnosed with PDA. However there are very few guidelines on how to manage or work with a person with PDA, where conventional Autism friendly approaches are not effective. Have you got any advice please? Thank you, Cat
Just like I believe that Autism is a social construct and doesn’t exist as a specific ‘thing’ biologically or otherwise beyond the imagination of the people doing the diagnosis, so the same can be said about PDA, which I see as the latest fad with a growing industry for professionals to make money out of. There is no shortcuts to finding out about and understanding each particular person and their unique context are and what they wish to change and what their dreams/ambitions/strengths etc. are. No diagnosis, whether autism or PDA will give you the magic ‘blueprint’ for understanding them or what they and their families might find helpful.
But a diagnosis for many can lead to insight and awareness into their difficulties. Without this many are suffering with chronic mental health problems and blaming themselves for their short comings. 61% of adults say that getting a diagnosis came as a relief. Where do you stand on this?
I understand and accept what you are saying. There are indeed psychological functions to a diagnosis, such as a sense of being understood and validated and a hope that now improvement can come about. However, these are functions that a good therapeutic alliance can provide and there are a big variety of models to choose from to help people with the task of understanding or the task of making changes in their lives (if that is what they wish to do). Many people subsequently lose 'faith' in the utility of the diagnosis and as your statistic says nearly 40% don't find a diagnosis helpful. An important insight to factor in here is whether a diagnosis leads to improved outcomes and if so in what (symptoms, relationships, functioning) etc. We simply don't know at present. In other diagnosis made by psychiatrists/psychologists, there is much evidence that diagnosis is associated with worsening long term outcomes for many.
We are almost half way through the session already, just over 30 minutes of questions left...
I don't agree with your comment that there is nothing autism-specific about treatments. NICE has recommended that, for example, CBT may need to be modified to meet the needs of autistic people. This means that the CBT should be personalised to the needs of the individual but it also means that it may include 10.1.7.3 Consider adapting the method of delivery of CBT for children and young people with autism and anxiety to include: emotion recognition training greater use of written and visual information and structured worksheets a more cognitively concrete and structured approach simplified cognitive activities, for example, multiple-choice worksheets involving a parent or carer to support the implementation of the intervention, for example, involving them in therapy sessions maintaining attention by offering regular breaks incorporating the child or young person's special interests into therapy if possible.
Show me or refer me to the evidence of studies conducted that have demonstrated that this form of CBT or indeed any other specific treatment has deferentially improved outcomes for those with an ASD diagnosis when compared to those without who had a similar level of functioning (e.g. similar IQ).
What about people who find a diagnosis helpful in terms of understanding themselves and finding a like- minded community? Will it not be harmful to them?
I don’t know to be honest. I understand the fear and much prefer what the neurodivergence movement have been doing for those so diagnosed than the more medical/disorder view. I understand that there is possibility for community/shared experience for them. What I don’t know and am concerned about is the impact of such a movement in premature acceptance of this concept and how it may contribute to the resulting and on-going rapid increase in numbers diagnosed and this happening at a time were we have virtually no data on how this may impact on this larger group of people’s outcomes in all sorts of spheres of their life, from employability to self belief’s about what they can and can’t change in their lives.
I was just thinking exactly what Charles has said re CBT, are you saying the NICE guidance is not based on evidence? Surely there are many occasions when having the autism label is useful, I agree a diagnosis does not give you a blueprint to an individual's needs but autism knowledge could well be a starting point to better supporting someone?
I have just quickly looked at the link. I would need to look at each article, the first I saw is typical of this field compared a group who receive the intervention with a waiting list control group - not an appropriate design for the important comparison. I suspect, knowing a lot about this literature that this will be typical of what I find. I have been previously involved in mental health NICE guidelines as reviewer and part of a consulting panel of experts etc. They are eminence based not evidence based guidelines (they depend on who sits on the guideline group more than what they evidence was found - at least in mental health). I can point you in the direction of a couple of publications I've been involved with about this.
Another question received by email: I have read the prognosis that ASD should be regarded as due to ideological changes rather than scientific discoveries, and not labelled. My son was always regarded as different at school, did not make friends, and I had to organise 1:1 tutorage. If he had a label he might have been in the A stream all along as they would not have misunderstood him. My autistic brother born 1946 now deceased at 64 was diagnosed with all sorts of disorders (not ASD) and given lithium plus a psychiatric drug. That's why I encouraged my son to finally get a diagnosis. The question was - what would have happened differently if my son had got diagnosed before 30-indeed before 19? He had no true friends at university and finished up in the secure wing of a Salford hospital many miles from home. This was because he acted strangely towards staff who imprisoned him without warning. Would they have treated him better, if they had known he was ASD - probably! Thank you. Ann.
I'm sorry to hear that but I'm sure you'll understand it is impossible to answer that question. Neither of us have the crystal ball that will answer this. I am not sure that we have any evidence at present about whether an ASD diagnosis is leading to better outcomes or not. We have a problem with massive over-prescribing and the rise of ‘risk management’ and risk averse thinking in services is leading to more people, including children and younger people being prescribed psychiatric medications long term (the evidence currently suggests those who get longer term prescriptions are likely to do worse not better) and rising numbers being put under ‘sections’ of the mental health act (i.e. forced treatment, usually meaning they are forced to take these medications). Whether a diagnosis of ASD would protect against that I am not sure, but I am dubious. The trend in recent years has been for children diagnosed with an ASD to be put on medication including ‘anti-psychotic’ medication for dealing with anxiety or challenging behaviours.
Define positive outcomes - who decides the good ones? In whose eyes is "success" achieved? Slippery slope.
Very good point. In whose eyes indeed. Firstly and most importantly I think it has to be in the eyes of the person concerned and how they perceive and what they and others who know them see as desirable outcomes. Then there are some more concrete 'citizenship' based outcomes that can be measured more empirically, such as employment, income, housing, whether they are in a relationship etc.
We have just 15 minutes left, time for the last few questions...
Do you think the national campaign by the NAS for more diagnosis to be misguided?
Yes I do. To do that without any knowledge on how this might impact on such peoples’ outcomes is, I believe, unethical as well as misguided.
Many clinicians such as Tony Attwood talk about the need of CBT needing to be adapted if someone has autism. There are many people with autism who feel the NHS service fails them as they don’t understand them. This is documented in the Westminster commission on autism report "a spectrum of obstacles" many anecdotal evidence that clinicians need to better understand autism and how it affects them. You are right about the therapeutic alliance, but an understanding of autism and how it affects them helps build the therapeutic relationship.
I think it is more an understanding of the person and their beliefs and ideas about how change might happen as well as broader understanding of their context that the actual evidence says is more important, not just anecdotal evidence. After all, the therapy might be better aimed at the person interacting with that individual rather than just the individual.
I have an Asperger's diagnosis which I received as an adult. It has taken my life into a different sphere that has been both rewarding and frustrating. I do have this recurring thought about part of the autism debate is that sometimes we're fooled by humanity and that the need to classify and understand (which is the basis of enlightenment/scientific method) often gets in the way of living as human beings in all their diverse ways. An autism diagnosis can be seen as a gilded cage especially when I see autistic people build their identities as self-advocating their diagnosis. It’s more of a rambling thought than a question but it concerns me.
I agree with your ramblings! This is my concern too, we limit our ideas about the full spectrum of what makes up a person and their life context if we get too preoccupied with focusing on what is only ever a part of that person's experience/behaviour when focusing on any diagnosis.
What do you make of these new apps as way of diagnosing autism?
I don’t know too much about them but they sound like a bad idea
If you are referring to better diagnosis for women and girls. absolutely not. More awareness is needed for how autism affects women and girls. for far too long we have had a male bias in diagnosis.
At a time of cuts is it possible that authorities will seize on this idea as a means of saving money?
You are I suspect right and it is a danger. But something strange is going on with disability benefits that needs to be discussed. Mental health diagnoses have become the leading reason for claiming disability/sickness benefits and has been steadily increasing in numbers on long term benefits whilst for other medical conditions numbers have been going down. I am unclear how many of those receiving such benefits have a diagnosis of autism, so cannot comment on this directly, but unlike most other areas of medical practice, it seems the more we diagnose, the more disabled people we seem to get (a pattern repeated across Western countries). The other point to keep in mind is that, for example, disability benefits was always meant to be need specific not diagnosis specific. This is an argument that needs to be made as we know the needs of people who receive a diagnosis of autism are hugely variable from some no extra support to those who need 24hour care.
We will be ending the discussion shortly, very sorry to those who haven't had their question asked today...
All this makes me think of Thomas szarsz and the myth of mental illness. why don't we get rid of all labels then? if depression and anxiety is a problem with everyday living?
I have indeed been campaigning to stop using diagnostic systems like ICD and DSM. I feel similarly about all mental health diagnoses, including autism. The evidence indicates that it doesn't help us improve our scientific knowledge or improve clinical outcomes.
Isn’t the bigger issue lack of awareness, understanding and support around autism? Doesn’t this argument detract from the above?
Not in my opinion. If you look at the campaigns that have happened around raising awareness of mental health conditions (e.g. mental health issues generally, depression, mental health in children etc.) whether they be to GPs, general public etc. they have led to increasing numbers diagnosed, increased prescribing of psychotropic medication, increased numbers receiving disability benefits, but no improved outcomes and in many cases worse outcomes. I don’t see any reason why this is not what will happen too with autism.
Would you say to parents fighting for a diagnosis for their child don’t bother? What is the alternative?
I’d want to understand – much more important in my clinical experience – that if they got a diagnosis what difference do they hope it would make. This conversation in answering that question leads to a much more specific understanding of what the potential therapeutic goals are for that young person and/or their family. If a diagnosis may aid achieving that goal (e.g. access to an ‘autism outreach service’ for support in school and the school agree that would be helpful) then we can look at making a diagnosis, however, often the goals when they are more clearly articulated (e.g. dealing with anxiety about certain situations, dealing with difficult to manage behaviours etc.) are not impacted on either way by whether they get a diagnosis or not, so it becomes irrelevant to the therapeutic task.
Thank you so much to Sami for being our panelist today, a lively debate! We look forward to seeing you in October.
Sami will be speaking at our conference ‘Beyond Autism: What does an autism diagnosis mean?’ on 19th October in Manchester. You can find out more on our website: bit.ly/BeyondAutism
If you have any comments about today's Q&A please email Anoushka at firstname.lastname@example.org. Follow us on twitter @ResearchAutism and Facebook https://www.facebook.com/Re... to hear of future events. Thank you.