The diagnostic spectrum

Introduction

A lot has been written about autism and spectra, but there’s one spectrum that is seldom described in clear terms; that of the supposed quality of one’s diagnosis, whichever one happens to have. Thus I have attempted to list the basic categories.

To counteract assumptions about the relative quality of the different kinds, they’re listed in alphabetical order.

This text is mostly anthropological in nature. Criticism of the current state of psychiatric diagnostics with respect to autism will be discussed elsewhere.

Types of diagnosis

Diagnosis by famous diagnostician

This seems by many to be considered the finest in contemporary diagnostics. One thing that can be said in defence of this position is that several of the most well-known diagnosticians are also conducting their own research on various parts of the spectrum, and may by virtue of this be more knowledgeable within their chosen area.

However, having one’s book published doesn’t make one a better diagnostician, and perhaps especially when dealing with autism, nothing beats experience. Therefore, while the famous ones may have a lot of experience and be very good at what they do, so are the lesser known but equally experienced ones.

So while having a big name on one’s diagnosis may help to convince narrow-minded bigots that it’s correct, it usually doesn’t have any value of it’s own.

Diagnosis by random psychologist

This is the lowest form of diagnosis that can be considered official. In effect, it consists of a psychologist deciding, in many countries after only a few hours of interview, that one fulfils the DSM-IV or ICD-10 set of diagnostic criteria well enough to get the label.

As official diagnoses go, this generally agreed to be the least reliable kind, especially since most psychologists have little or no knowledge of the actual autistic spectrum. False beliefs and incorrect assumptions are very common. Several well-known diagnosticians, including Christopher Gillberg, stress that on no account should a diagnosis of ASD be made by an inexperienced psychologist. While there is no formal requirement that the diagnosis be made by a specialist, it’s strongly recommended by many and with good reason.

People who seek and have a real need of a diagnosis may be denied one by less knowledgeable professionals. Through ignorance and inexperience these people very often get hung up on some irrelevant or incorrect detail that they see as ruling out any possibility of the presence of autism; thus denying the person both recognition of their condition and access to needed aid. If you’ve done even a minimal amount of reading, expect the average psychologist to know less than you do about autism.

Also, people who show some of the more popularly known, superficial signs of being on the spectrum may incorrectly get an ASD diagnosis by a sloppy diagnostician. Some believe that the label of Asperger syndrome is especially susceptible to this, as its definition is still in flux, as there’s a lot of praxis contradicting the actual written criteria, and as it’s one of the current “fads” in the neuropsychiatric community.

Diagnosis by specialist diagnostician

This is the minimum one should aim for if one is to get any kind of an official diagnosis. Your local psychologist may if you’re very lucky have read a book or two about autism, or if you’re extremely lucky will perhaps even have met a few autistic individuals. However, that is still far from enough. When it comes to diagnosing something with as wide a range of expressions as autism, nothing beats experience.

Thus, if possible, a diagnostician with real experience should be located. Not only will this minimise the risk of mistakes, the more knowledgeable person will also most likely have other kinds of useful information, such as contacts for support groups, knowledge of the relevant regulations surrounding support, etc.

Diagnosis by specialist team, including lots of tests

This is no more valid than the previous one, as there is no test that can reliably detect the presence of autism. What the tests can show is a person’s ability in certain specific areas. Opinions differ on whether these tests are able to test for anything useful at all.

The Autism-Spectrum Quotient claims to be capable of filling this role, but while it’s been widely discussed it hasn’t been widely recognised. The most commonly used tests are the WISC for children, and the WAIS for adults. However, while there have emerged certain patterns, the only relatively safe prediction is that autistic people will get scores that are uneven compared to the norm. That is, that indicates a different distribution of skills compared to the general population.

The critics of these tests point out that the tests do not reflect real life situations, and as the autistic way of thinking seems to be the psychology field’s new “dark continent”, the assumptions on how these abstract tests relate to actual abilities must be questioned. We will likely remain a “dark continent” until the day we have full human rights, as the case was for women.

For one thing, it’s known that autistic people think in more concrete ways, which may make abstract tests completely inapplicable. For another, solving social problems sitting down in a quiet room, alone or with a single interviewer is quite different from solving them at a noisy party, surrounded by people, at least one of whom is expecting a prompt reply to what he or she said.

What these tests can show, provided one considers them applicable to autistic people at all, is what skills and deficiencies one has. While they cannot ‘measure one’s autism’, they may be able to present a skills profile that can be useful for (for instance) helping to adapt education to best fit the individual.

Peer-verified self-diagnosis

Many people, once they’ve found out about autism and started reading about it, enter one of the many communities collectively called the autistic community and proceed to exchange thoughts, experiences, ideas and advice with other autistic people. In doing so, and through finding themselves having a lot in common not only with the descriptions of autistic people but with actual autistics themselves, their self-diagnosis becomes peer-verified.

Of course, not everyone finds that their experiences actually match those of other autistic people. Some of those who don’t move on to other parts of the autistic community, others decide that autism might not be the best description of their inner functioning and move on to other communities altogether. This is a natural and normal part of the self-discovery process and should not be discouraged or prevented.

The perceived value of a peer-verified self-diagnosis of autism or another autism spectrum label varies greatly depending on who you ask, from parts of the autism community deriding it as less than worthless to parts of the autistic community considering it to be more accurate than any professional diagnosis.

Remote or post-mortem diagnosis

This is basically someone claiming someone else is, or was autistic. Most people who know something about the spectrum are guilty of having done this at one time or another, including some well known diagnosticians. In the (extreme) case of the post-mortem diagnosis of Albert Einstein, it seems that virtually everyone in the autism and autistic communities, except the proprietors of supposedly “medically necessary” treatments, are making this claim.

Of all the possible forms of diagnosis, this is the least certain one. Its claim to validity is based on the fact that all the various autistic spectrum disorders (ASDs) are still officially defined as syndromes, i.e. as sets of external behaviours, instead of internal differences of mind.

Most people seem to go through a phase of diagnosing everyone around them as they’re discovering autism themselves. Fortunately for their surroundings, most people also grow out of this phase after a while.

Self-diagnosis

This kind of diagnosis has become a lot more common in recent years, in large part due the increased exposure in mass media of the existence of Asperger syndrome and high-functioning autism. Another related reason is the growth of the Internet, making an ever growing mass of relevant information available to the general population.

It is also widely agreed that, since the existence of autism in individuals with normal or above average intelligence, the ability to speak, etc. was only recently recognised, that there’s a huge backlog of autistic adults who remain undiagnosed. This is likely to remain the case for some time to come, as virtually all the increased funding, research and general focus is geared towards autistic children.

Unfortunately, some people make it their business to attack autistic people lacking a formal diagnosis, claiming that they’re imposters. This sometimes makes it necessary for vocal members of the autistic community, who have no interest in or use for government aid, to get a formal diagnosis simply to be entitled to their own opinions.