Book review: “Send In the Idiots: Stories from the Other Side of Autism” (ableism alert)

I’ve just finished reading “Send In The Idiots: Stories from the Other Side of Autism”, a book (published in 2006) by Kamran Nazeer, an autistic civil servant in the UK. Once I got into it, I found it quite compulsive reading, perhaps because – unlike a lot of the books I read – it had more the feel of a story/novel (which makes for easier reading than more fact-based or academic style books), despite it being an account of true events. The book is based around a series of events in which Nazeer revisits his autistic former classmates, around 20 years after they all knew each other as children at the same special education school.

Nazeer is autistic himself so this is an autistic-authored account of autism. More specifically, though, it is an account of various autistic lives, interspersed with thoughts from his own life as an autistic person. It is not a book explicitly geared around seeking to describe or explain autism. It does, however, represent autistic lives and so, by implication, has things to say about autism. In addition, the author does at times talk about autism in a more direct fashion, especially towards the end of the book.

Unfortunately, I found the book to be overall rather troubling, to say the least. Some parts left a very sour taste in my mouth. This isn’t to say that all or even most of the book is troubling – far from it. But the only reason for this is because a lot of the book is taken up discussing things other than autism, or focusing on the very personal and particular specificities of the autistic lives being chronicled. Much of this material is likely to be interesting or valuable to readers. But I am left plagued by the question of whether I can maintain respect for these aspects in the context of the many troubling things that are also within the book. Where autism is discussed directly, it is usually not in a good way (although some of what the author relates is accurate and appropriate*). My point is that if Nazeer were to write an entire book dedicated to autism more generally, I imagine that it would be a highly problematic, and often ableist one (even more so than this current book).

(*E.g. He often does a good job of describing the social and “repetitive” traits of autism as a form of “containment strategy” in the context of sensory overwhelm. And there are nice quotes such as this: “the challenge for autistic individuals is that they are often overwhelmed even by their own minds”.)

This book doesn’t seem to have much profile within the autism/autistic community (perhaps because it is now a bit dated). I couldn’t find anything in the way of critical or autistic-authored commentary on the book. It did receive attention in the mainstream media when it was published. All of these reviews are positive, fail to notice or comment on the book’s ableism, and some of the reviews contain inaccurate and ableist comments themselves. For example, articles in The New Yorker, in the The Independent, and in The Guardian all praise the book. The Guardian calls the book “moving” (if by “moving” they mean “moves me to want to rip out entire pages from the book”, then sure). It also states that it has little patience for the cliches of autism (this is patently untrue – as is made very clear by all the quotes I list below). Here is one troubling segment from the Guardian’s review (my commentary in red):

“Today, Nazeer, at 28, is a Whitehall civil servant, a policy adviser. Obviously something went right (obviously). He is softly spoken, but not diffident; forthcoming, but also receptive; amusing and readily amused; friendly and befriendable (as if not being these things makes you less worthy than someone who is these things…?). Most important (no), he is fluent in the give and take of conversation, the spark of reciprocation that for most of us illuminates our social dealings but which remains the central mystery (no) to those affected by a disorder (no) often described as ‘mind blindness’ – an inability to intuit what someone else might be thinking or feeling (no)… There are pressure (civil rights) groups that believe autism is a special way of life and that when people try to treat autism, what they’re doing is obliterating this specialness (they are, but not only the “specialness”, rather everything about the person). But I dislike this sentimental idea that autistic people are somehow unreachable and that they should stay that way.”

I realise that I’m now venturing into the perhaps somewhat dubious territory of writing a book review about a book review, but this provides a taster (and fair warning) of what is to come. It is also worth highlighting that these reviews demonstrate how the sentiments expressed in “Send In the Idiots” are not exceptional. Rather, they fall right in line with our society’s predominant conceptions around autism (although I would like to think that we have evolved somewhat since 2006).

~

Here is why “Send In the Idiots” is ableist and deserving of being called out for its often misleading and dehumanising representation of autism. The quotes tend to get worse as the book goes on. I should mention trigger warnings for suicide and, obviously, for ableism (including ABA, the “r” word and unfortunately a whole lot more).

In what follows, the black text are direct quotes taken from the book (in which the use of “I” refers to Nazeer, the author). Blue text is me paraphrasing from the book. The red is my commentary (I tried to limit the amount of anger and sarcasm I felt compelled to express, but there are still instances of it).

  • “Autistic people are confined, to a greater or lesser extent, to a world of their own” – a totally inaccurate and dangerous trope

  • “An autistic child will remain entirely unaffected by another person’s anger or happiness, or by an argument going on between his or her parents ten yards away” – the reality probably couldn’t be further from the truth.

  • “I didn’t know how they [his former classmates] thought about their condition. It might be a source of strength: “I have overcome this”” – apparently to feel strong as an autistic person is to feel strong that you have “overcome” your autism.

  • “There are certain things that are missing from the lives of autistic individuals” – yeah, like some understanding and empathy directed towards us

  • “Autistic individuals find it difficult to develop intuition or empathy” – a not-so-wonderful misconception/dehumanising trope to launch us into the book (at least I knew what to expect from here on in)

  • “…autistic people may only be able to rely on one autos, their own”.

  • “…the world that lies beyond their reach”.

  • “Over the course of the evening we developed a rule that whenever someone started a compulsive activity, someone else slapped his or her hand”. – self-inflicted ABA?

  • “Autistic people typically aren’t good at relationships” – a rather blanket statement to say the least…

  • In this book, meltdowns are not meltdowns, but “tantrums”

  • “It seems unwise to encourage them in seeking enclosure” – on autistic children using a “hug box” when overloaded. If they want to and it helps them self-regulate, then why in the hell not?

  • “Autistic children prefer to play on their own (often true), though it’s not an informed preference (it truly is). They prefer to play on their own because they don’t understand that it may be possible to play together with another child (I don’t think so somehow…)”

  • “Autistic children simply don’t understand that there are minds other than their own, which might have thoughts different from their own. This is why they display so little interest in others” – Please stop spouting utter nonsense. (To be fair, Nazeer does go on to offer an interesting critique/set of adjustments to the ToM theory, but ultimately seems not to depart from its basic premise.)

  • The author describes himself as having been a “mean” child for displaying what are autistic behaviours (such as echolalia, or non-response). This is particularly ironic as he describes a particular instance of such “meanness” which occurs in response to a teacher being aggressive towards him.

  • On a few occasions Nazeer describes instances of himself suppressing his own stimming, which he frames as a positive thing.

  • “Why did you get better?” (a question asked of Nazeer) – by “better” I can only presume they mean “no longer seeming autistic”, or “having a job”, or “leading a normal life” or whatever.

  • “It is easy to understand why autistic people are often mistaken for being retarded” – this is something which simply should not be said (or thought, or implied at, or anything)

  • “…individuals at the harsher end of the autism spectrum” – I honestly haven’t heard this one before. Makes a nice change from “severe” I guess?

  • “Sheila [the mother] tried to work out if she [her autistic daughter] was feigning interest in order to please her father, which would be an impressive act of empathy for an autistic individual” – Oh my, this is meant entirely seriously. Please stop and think about what you are saying.

  • “The only thing that Sheila was sore about was that her daughter would never become an equal, never someone who would challenge her” – Sheila is the mother of an autistic daughter. This is obviously a rather repulsive thing to think, say and report in a book. Autistic people are of equal worth to nonautistic people. And if her daughter is unable or unwilling to challenge her (which isn’t really a thing), then this probably says more about Sheila than her daughter.

  • “Autistic individuals often impel sympathy. Other people want to protect them, to care for them” – We don’t want your pity or even your sympathy. Also, the reality is that autistic people are among the most vulnerable and abused groups of people in society. It is other people doing this abusing (even if under the guise of “care” – e.g. what Radical Neurodivergence Speaking calls “careless care-givers”)

  • “…they [the author’s parents] were scared stiff that I might go to college somewhere far way, not only because of the remains of my autism, but because I was only sixteen…” – where did the rest of your autism go?

  • “After all, there were few rewards to be derived from their relationships with autistic children” – Here the author is referring to autism professionals and questioning their motivation to work in the field. This is an incredibly ableist and damaging thing to say. I suppose he thinks the same must apply for the parents and peers of autistic children, that we are simply experienced as unrewarding people to be around?
  • “Autistic children did not typically know that they were being helped out. We did not typically form a bond with the carer.” – Oh we know. We might just not experience or interpret it as actual “help” (because often times it isn’t). Perhaps the reason we do not “bond with the carer” is in large part precisely because of their misguided attempts to “help” us.

  • “[Autistic children] didn’t necessarily get better”

  • “the child is left untethered and starts to fall into autism” – Ooo I haven’t heard this metaphor before! Note, here the author is describing the old “refrigerator theory” of autism which he (thankfully) does not agree with.

  • “I would do the same if I was a cancer specialist and a patient of mine discontinued treatment” – Here the autism professional is describing going to great lengths to chase up the parents of the autistic children she is working with (if they suddenly stop attending her sessions). Associations between autism with cancer are plain wrong. We are not “patients”. We do not need to be “treated”.

  • He bigs-up the “terrible” situation of the parents, how “terribly sad” it is “these parents throbbing with guilt and shame”. Incidentally, he doesn’t appear to have much empathy for the challenges the autistic children themselves might face, nor the damaging impact such parental attitudes might have on such children.
  • His views on autism being a genetic phenomenon and what this might mean emotionally-speaking for (nonautistic) parents are troubling. Nazeer remarks that parents have to live with the knowledge that they have passed on autism through their own genes. When the parent is non-autistic and the child is autistic he calls what the parent might feel “survivor’s guilt”, something which has the potential to introduce many more “prickles” into their interactions. – if this is your attitude, then yes (but as the parent you’re the one who creates those prickles with your own guilt and shame)

  • He describes the misplaced theory that autism is caused by failures in the digestive system… and doesn’t seem to contradict it.

  • “And there is emerging evidence that SSRIs tend to reduce the severity of autistic symptoms”. – If SSRIs help, it’s because they stabilise mood. They don’t act on autism itself. Also drop the pathologising language please.

  • One of the “hard, material symptoms” of autism includes “an impaired sense of empathy”.

  • The author makes an analogy between autism and Deaf culture, which is a great one to make. However, he makes it for all the wrong reasons, namely to argue that Deaf culture is valuable and legitimate, whilst autism/autistic culture is not: “Autistic people are in a different position, though, from deaf people… Sign language is a highly textured form of communication (he is implying autism is not). “Unless autistic people do receive the right treatment… they simply cannot engage in satisfying ways (I presume by “satisfying ways” he means neurotypically-defined ways)”. – Ultimately the author appears to be unaware that autistic people communicate in distinctive ways, in ways that are in fact communication. Furthermore, owing to this perceived absence, we are deemed to be in need of behavioural intervention to fill our void so we are able to learn to communicate “satisfactorily”.

  • “There may be something distinctive about autistic minds (there is definitely a lot of things distinctive about autistic minds), but at least some of that autism has to be removed, or eased, before autistic people can communicate meaningfully, even with one another, and set their minds upon the world” – There is just so much wrong with this statement. A complete reversal of every aspect of it would probably arrive at something like the truth. Autism is, in fact, a hugely, deep, rich and meaningful – though certainly different – way of communicating with the world.

  • “What is significant isn’t simply that we [the autistic people in the book that as adults got “better”] are all less idiotic than before” – There may be humour intended in this, but implying a connection between autism with idiocy? – not great

~

A few of the pages towards the end of the book became especially troubling, so I am going to explain and quote from this portion at length. As a warning, my own copy of these few pages is almost black with words of protestation, frustration and swearing.

Elizabeth’s story:

Elizabeth is an autistic woman and one of the author’s former childhood schoolmates. She tragically committed suicide as a young adult. For the book, the author is spending time with her parents (Sheila and Henry) to find out more about her and their lives. Clearly, the suicide is an awful end to Elizabeth’s story. I found it repellent that Nazeer had this to say after recounting what happened:

  • “I think that Elizabeth got better because of them [the parents], because of their attention, because they didn’t panic” (also, the author notes earlier, because of their intelligence as well) – This is the first time I’ve ever seen a suicide interpreted through the lens of “getting better”. It is also clear that the years leading up to this tragedy were not exactly easy for Elizabeth either (i.e. most appropriately viewed in terms of the very opposite of “getting better”). I have literally no idea how the author arrived at this view point. (In addition, at another point in the book, Nazeer states that “I got better, and so did all of my former classmates” – has he simply forgotten about Elizabeth, or does she no longer count or what?) To me, this seems like a questionable attempt to uphold the position of the parents. Whilst they certainly can’t be blamed for the suicide, it is not appropriate to doll them with praise for the way they tried to help (or not help) their daughter. I don’t see how intelligence, attention or calmness have much to do with it (in fact, perhaps the parents should have panicked at their daughter’s clear distress). The narrative seems to present autistic distress as inevitable, as un-amenable to outside influence, whilst presenting parents as angels that can ultimately do no harm.

  • “I am amazed that they [the parents] are not assailed more often by regret, or desperation [at their daughter’s suicide], but I am glad that they are not” – Yikes, this seems to be privileging the value of the lives of the non-autistic parents over that of their (deceased) nonautistic daughter. Regret and desperation are perfectly appropriate reactions when your child dies, especially in unforeseen and dramatic circumstances. It is categorically wrong of the author to praise the parents for not feeling these things strongly. Would the same thing be said if it had been a nonautistic child? That is the question.

  • This is perhaps the worst passage of the entire book. However, this comment does comes from a third person and not the author himself. Still, the fact the author would choose to relate it and without providing any criticism of what was said (except to say that the father was angry when he wrote it), is troubling indeed: In the immediate aftermath of Elizabeth’s suicide, the father felt compelled to write an email to some of the other parent’s of autistic children he knew. Nazeer relates the content of the email: “it asked all the parents not to overextend their [autistic] children, to keep them at home if possible, and not to allow them to have friends or lovers and certainly not to have children”. – This is not only deeply misplaced and inappropriate advice in a practical sense but, of course, deeply dehumanising as well, hinting at eugenic impulses.

Moving on from this episode of the book, the number of problematic and repellent statements accumulate further.

On early intensive behavioural intervention:

  • “there was strong evidence that early and intensive training of this sort could have dramatic results” – Yes, but perhaps “dramatic” of the wrong sort (especially from the sort he is talking about which is ABA). Also there isn’t strong empirical evidence for anything when it comes to EI in autism.

  • “our teachers did it [eye contact] to us almost fiercely and we began to respond” – the author presents this as a positive thing. Of course, a more accurate description than “began to respond” might be “feel coerced” or “learn to perform”.

  • “studies on this type of behavioural intervention have shown 20-point plus gains in IQ over two to three years, as compared to control groups” – utter rubbish

  • “such gains [referring to the above comment on IQ] are close to overwhelming in a field where even small improvements have enormous human consequences – these are neither “gains” nor “improvements” precisely because of their “enormous human consequences” – which are often overwhelming negative for the autistic person, especially over the longer-term.

  • “Some level of intervention is necessary, and it doesn’t often fail” – If he is talking about behavioural intervention (which he most definitely is), then this is totally false. These is no reliable empirical evidence that it works, and lots of anecdotal evidence that it causes long-term mental health issues for autistic people.

  • “I was afraid that I might not have come far enough”. “Might she have expected me to do better than I had?” – Here, the author has met his former childhood teacher for a chat in a cafe 20 years or so after having last seen her. He is aware and anxious that they are probably monitoring him for observable signs of autism. That he might be exhibiting signs of autism as an autistic person is apparently a highly undesirable thing.

  • “I had only reached the threshold beyond which I could even have this discussion with them [his former teachers/therapists] thanks, surely, to professional help, their professional help, and a lot of consideration, and work, and care” – This falls in line with the dangerous and ludicrous argument that any and all autistic “achievement” (as is being conceptualised here in highly normative terms) can be attributed to the ABA that the autistic received as a child. The author is clear in attributing all of his “empowerment” (which in itself is conceptualised in direct opposition to his autism) to the early therapy and education that he received.

  • Referring to behavioural interventions such as “aggressive eye contact”, Nazeer remarks that “these techniques work, but their success doesn’t tell us enough about the condition itself” – a) they do not work, they are not successful, b) perhaps they don’t tell you anything about autism, because autism is not a behavioural condition (or because what you are acting against is not autism at all).

On the gross misunderstanding and disparagement of (what is actually progressive) autistic advocacy

  • The author does not say which particular advocacy organisation he is referring to, but he has this to say: “it was a monthly get-together of an organisation founded on the basis that people like Rebecca and Ira [his two former ABA therapists] were trying to eradicate a distinctive way of being (this is precisely what they are trying to do) and that there was a need to stop them (there really is). According to the heterodoxy, autism was not a developmental disorder (it isn’t – the disorder part). People who are autistic suffered no lack (we don’t, at least no more than nonautistic people), their symptoms were not shortcomings (it continues…), but simply the characteristics of the autistic individual, and the way of life and the style of thought of the autistic individual were as valid as what clinicians defined as “normal” (they resolutely are just as valid) – The author does not follow this up with explicitly arguing against these statements, although he does state that his position is not aligned with such advocacy organisations. He is essentially relating the basic tenets of the neurodiversity movement and of an autistic rights framework as if we should be disparaging of these things – !

  • A little later on, Nazeer states that “the premise [of this advocacy organisation] was that… this [autism] was a creative and valuable way of being” – and this is something we should disagree with? It is not said straightforwardly or explicitly but the message seems to be that autism is not a valuable way of being (in the way that nonautism presumably is). This is ableism in its purest form.

  • In trying to determine the value of autistic life, he turns to a discussion of autistic strengths. He writes that most of the strengths he observed in his former classmates likely exist “despite their autism”. He then scrapes the bottom of the barrel to come up with possible autism-related strengths of his own, of which he finds only 2 or 3 and writes off as “trivial”. He implies that his strengths and accomplishments in life are separate to his autism. Moreover, the non-too-subtle assumption underlying all this is that autistic life does not have value in its own right, and that it can only attain value through the compensation of extraordinary talent.

  • The author denigrates any of the advantages that might be conferred by being autistic, stating it is “difficult to construct a political movement” around this (the political movement is built around equal human rights not “advantages”, so this is a moot point), and that these “advantages” (i.e. strengths or positive about being autistic) are “not emblems of a valuable and distinctive way of life” – Such crap. Even if you want to believe that autistic ways are not valuable, they sure are distinctive.

  • Further commentary reveals that he believes autistic advocacy to be based around the notion that autistics are better than everyone else because they are autistic. This is a juvenile straw-man argument. The neurodiversity movement wants nothing except equality. It would have been nice if the author had done his research before writing the book. 

  • “The view that autism has to be defended as a distinctive way of being (a notion the author appears to take issue with) originates, I think, from the same core belief [the other belief being that autism is a tragedy]: that autistic people don’t really get better (the book is essentially predicated on this whole false and ableist notion of “betterment” as equivalent to a “lessening” or “curing” of autism). And so instead of trying to measure up to societal norms, autistic people should be permitted to maintain their own (Oh we really should. And we don’t need “permission” either thank you).”

  • “And then there is the view that autistic people can’t be reached, or that they shouldn’t be, that their self-enclosure is or ought to be permanent” – I don’t think anyone subscribes to this view – not curebies (because they’ll do anything to break the so-called self-enclosure), and not neurodiversity advocates because we know better to think these things about autism in the first place.

On the notion of being “cured” of autism:

  • At three points towards the end of the book the author relates that his former teachers – upon meeting him as a adult – tell him “you are not autistic”. The reasoning they provide for this is that he was able to run “the conversation from start to finish”. It is unclear – until the very end of the book – whether or not this is a joke (it was in fact a joke – I think…). The point, however, is that Nazeer does not appear outwardly autistic to his former teachers. Not appearing autistic is conflated with not in fact being autistic. This game of teasing that the teachers indulge in, of judging whether he still appears/is autistic, is deemed to be an entirely appropriate one. It is also rather sickening that it is deemed to be the domain of the teachers (the so-called autism experts who, as it happens, barely know him as an adult at all) to determine this fact about him (surely Nazeer knows himself best?). The all-too-clear message is one of “congratulations, you no longer appear autistic, this is such a good thing we can all feel proud of”, whilst presuming that this means Nazeer barely is autistic anymore. In his own words: “I got better”.

  • Clearly, the author is still autistic. That’s just how autism works given that, you know, it’s an actual neurotype and not, in fact, some sort of disease. It is also clear from the author’s descriptions of his internal experiences that he is still autistic (not that we need proof of this, because of the aforementioned fact). It is also evidently clear that he goes to quite some length towards masking his autism, for instance, describing at several junctures how he employs social scripts or makes an effort to suppress his stimming whilst meeting with his former teachers. This, along with other learned coping strategies (perhaps with their roots in the early intervention he received) is why he doesn’t appear outwardly autistic. The whole thing is just rather ludicrous and tragic.

  • The author wants to seek the feedback of his former teachers about his observations (mainly about the other people) that feature in the book (which he is in the process of writing). They say there is no need: his observations are the ones that matter. This is all well and good. But then they imply that being autistic would diminish the quality of his observations, before jokingly remarking that “he isn’t [autistic] anymore” so “don’t worry about that”.

~

To conclude:

Now that I’ve actually collected most of the problematic statements in one place, I have to say that the impact of it all is more evident to me now than when I was actually reading the book. I think I’d like to conclude that this book borders on saying some truly shocking and repellent things about autism and autistic people (and, in truth, crosses and far surpasses that border). Most of these statements are not only completely inaccurate and misleading, but reinforce the dehumanisation and alienation of autistic people by our society.

This book, I think, is notable not only for its misrepresentation and ableism around autism (there are, after all, plenty of books like this), but also for the fact it is an autistic-authored account of such things. It serves as a reminder that autistic people are not immune to false or prejudiced and even downright repellent sentiments regarding autism. We are just as capable as anyone else of internalising prejudice of any kind from our society’s culture – including against our own kind. It is simply especially sad, I find, that these words are coming from an autistic person. Should we, as autistic people, know better? Can we be blamed? Who is to be held accountable? If not individuals, then society? If society, then what of individuals? We all need to take personal responsibility, regardless of neurotype. Being autistic does not give us a free pass or excuse to hold and propagate misleading, outdated or dehumanising views about autism (or anything else). We are to be held to the same standards as everyone else. We are subject to the same forces.

The book ends with the sentence: “The Idiots don’t need to be sent anywhere. We’re in the right place”. Perhaps so. I don’t know whether the author has progressed in his views in the intervening years since the book’s release. But, if not, perhaps he could consider taking an educational tour around the online autistic community. It’s evidently clear we need to “send in the (real) experts”.

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