One big obstacle on my way to a self-diagnosis is the thought that it would be very difficult for me to get an official diagnosis if I tried for one. Of course, self-diagnosis is valid – I firmly believe that, for others and for myself. However, there is the nagging question: if no one else would actually diagnose me, what right do I have to do it myself?
And why would the medical establishment not diagnose me? It all comes down to this: I’m not suffering enough.
Let me quote you a few choice paragraphs from the experts to show you how important this proof of suffering is in a medical setting. Here is Simon Baron-Cohen in a book called “Autism and Asperger Syndrome (The Facts)”:
A high AQ score alone is not a reason to be referred for a diagnosis. In addition, there has to also be evidence that the person is ‘suffering’ in some way (e.g. they are being bullied, or are becoming depressed, or have high levels of anxiety, or are not fulfilling their academic or occupational potential). (my emphasis)
And in the same book:
This reminds us that the AQ is not diagnostic – it is a screening instrument – and that a diagnosis is only given if a person is suffering to some degree. Having an autism spectrum condition remains a medical diagnosis that should not be trivialized. (my emphasis – note that the quote marks around suffering have disappeared this time round)
This attitude is probably guided by item D in the notorious DSM criteria:
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
In other words, if you are not “impaired”, if you are functioning too well, if you are not suffering, you don’t deserve a diagnosis. You can be as autistic as you like, if it doesn’t show (too much), we’ll not confirm that you are. This is also what leads to the absurdity of people losing their diagnosis, because, as they get older, they learn to get on better in the NT world (probably through improved masking and imitation skills) and are therefore not deemed to be deserving of a diagnosis anymore.
By the way, I am hardly the only one who is annoyed by this nonsense of the “lost diagnosis”. By chance, while I was working on this post, I came across this post on Chavisory’s Notebook, which talks about that very thing. I recommend that you read it for yourself, but let me just quote a couple of relevant sentences:
[…] the presupposition at play in this research design that, if symptoms are failing to appear on screening tests, it’s because the autism has disappeared, not that an autistic person has either learned a specific skill set or is exerting a continual effort to perform according to expectations, is one of the most basic manifestations of neurobigotry.
It must be that we are no longer autistic, because autistic people aren’t capable of learning or trying.
And it certainly can’t be that those efforts at fakery and concealment have meaningful costs to our well-being, because autistic people are not presumed to have well-being worth preserving.
(What a great word, “neurobigotry” – I might borrow that in the future!)
In Victorian times, people in need were divided into the “deserving poor” and the “undeserving poor”. The deserving poor had fallen on hard times through no fault of their own – perhaps they were a widow with children unable to support her family, or perhaps the breadwinner of the family was no longer able to provide for them because of illness or injury. The undeserving poor were those who had gotten into trouble through their own fault, or were “idle” or “workshy” – today they are known as “feckless scroungers”.
It seems to me that likewise autistic people are divided into deserving and undeserving, and the reason is the curious role of the diagnosis as the key to treatments and services. Here is Baron-Cohen again in the aforementioned book:
Diagnosis is only of value when it is not just a label but a passport into accessing all the necessary support services that each individual may need.
This is what it ultimately comes down to: money. Diagnosis in the case of autism is not trying to find the answer to the question “what type of brain has this person got?” but “does this person deserve having money spent on them?” It is almost as if autism diagnosis is a precious and rare commodity, which has to be rationed and can therefore only be given to people who really deserve it. This is why Baron-Cohen warns against “trivializing” the autism diagnosis. After all, if we gave all those non-suffering people an undeserved diagnosis, and they come clamoring for services, where would we be? And does that not take something away from those who are truly suffering?
It also seems to be the case that, possibly uniquely to autism in the medical world, that diagnosis does not determine whether the condition is there or not, it determines whether it appears to be there or not. To quote another sentence from Chavisory’s post above:
Non-autistic parents and professionals have a long history of mistaking the label for a thing with the thing itself (as does the title of this article*, conflating loss of diagnosis with loss of autism) when it comes to states of being they don’t understand well.
*a reference to this article https://spectrumnews.org/news/compulsions-anxiety-replace-autism-children/
The whole thing is just so many shades of wrong, it’s hard to find the words to describe it.
I believe, however, that I have identified the root of this wrongness. It lies in the conflict between the external and internal point of view of autism.
The expert opinions, the statements quoted above, the diagnostic criteria, they all spring from an external viewpoint: a neurotypical person observes the autistic person and determines what is wrong with them. The vocabulary makes it clear: medical diagnosis, clinically significant impairment, functioning. The medical expert compares the autistic person to the neurotypical majority, assesses to what degree they fall short when measured with the NT yardstick and judges them accordingly. This judgement, however, is based on behaviours observable from the outside. It does not ask what goes on inside the person. Okay, it does look at some things that are arguably inside, like anxiety and depression, but it does not ask how the person thinks, how they process emotions, how their brain works. It measures the deficits according to the NT yardstick, and if the deficits are great enough, you are “deserving” of a diagnosis and access to support. This support is meant to reduce the deficits and reach higher on the NT yardstick, and if you reach high enough, you lose your diagnosis. Great.
Tony Attwood speaks of “achieving” a diagnosis, which in my mind conjures up images of school sports day (shudder!), with your medical professional instead of the teacher and with the NT yardstick instead of the stopwatch and the measuring tape, putting you through your paces, evaluating your performance, and if your deficit is big enough, you’ve achieved a certificate, erm, a diagnosis I mean.
This is not to say that support and assistance in getting on in a world that is predominantly NT are not valuable. It is also true that autism can make life more difficult for a person than it would otherwise be, which is where the support comes in. But what riles me is the whole deficit-based view of autism, from which it follows that if you don’t show these deficits, you can’t be autistic. “But,” I hear some people say, “isn’t it a good thing to lose the diagnosis? Doesn’t that mean that you are better now? And isn’t it good that you don’t have to go through life with the ‘autistic’ label? That can only be to your advantage, surely?”
No. Losing your diagnosis (or being denied one in the first place) hurts. Because even with the outside label gone, inwardly nothing has changed. You are are still autistic, except now no one will believe you. Hasn’t the doctor taken your diagnosis away? How can you still claim to be autistic? Because you still are. And because “autistic” is more than a label. It’s an identity. How would you like to have your identity invalidated and taken away? Would you say to a gay man “you haven’t kissed another man in five years, you are no longer gay”?
The problem is neatly embodied in the word “diagnosis”. It anchors the assessment of austism firmly in the medical world – remember that in the paragraph quoted above Baron-Cohen talked explicitly of a “medical diagnosis”.
But “diagnosis” completely ignores the internal view of autism, the point of view of the autistic person themselves. For them, it is not a diagnosis, a measuring of deficits and a definition of what is wrong with you. It’s their identity. It is the way they experience the world.
I realize I’m repeating myself, but this is really the nub of the problem: the fundamental misunderstanding of what autism means to those who experience it. The vast gulf between the medical, DSM-driven, outside view and the insider perspective of actually autistic people. It does not have to be that way. Some experts, like Luke Beardon, are moving from the use of “diagnosing” towards “identifying” instead. I also don’t mean to say that all autism experts must be autistic themselves. You can very well have neurotypical experts assessing autistic people, if only they would employ some of that empathy and theory of mind they supposedly have in abundance. It’s not the neurotype that prevents someone from understanding, it’s the attitude.
But what about the key to services? What about the passport to accessing support and help? These things are of value to autistic people, but resources are scarce, and it is true that some people need more of them than others. (Even here I will not talk of “deserving” support, because that word hits entirely the wrong note.)
My solution is this: instead of a one-step autism diagnosis, you have a two-step process. First comes the identification, the confirmation of whether someone is autistic or not. Second, and only once that first step has been taken, comes an assessment of the help, support and services which would be of benefit to the individual. It is that second step that can be revisited from time to time. People’s needs change over time, and yes, people who need a lot of support at one point in their lives might need a lot less or none at another point. But with my system, a change of needs does not entail a change or removal of the label and the identity.
It’s simple, really. By separating the two steps, I have neatly removed the emphasis on suffering, the need to take a medicalized, deficit-based view of autism and the nonsense of “lost diagnoses”, and still incorporate the access to support and services.
Of course, I am rather taken with my neat solution. But what do you think? Does it make sense? Too simple? Maybe I’m getting upset over nothing and the bar you have to jump over to get a diagnosis is not as high as I imagine. Although my point would be that there shouldn’t be a bar at all. Let me know in the comments, if you feel like it.
Image: Ian Hislop holding two buckets, one labeled “Undeserving Poor”, the other “Deserving Poor”. From a TV programme he presented called “Workers or Shirkers – Ian Hislop’s Victorian Benefits”