Autism and Labels – what do they mean and are they necessary

Autism labels can be confusing. So what do they all mean? And are they useful?

Autism is a spectrum. That’s what everyone keeps repeating to me. And many special ed teachers I have met have said some variation of ‘we are all on the spectrum’. And many commentators/parents and teachers have multiple conspiracy theories about the autism epidemic. They usually start with ‘when I was at school, I didn’t know anyone with autism, and now they’re all over the place’. And end with ‘blah blah blah organic food, pesticides’ or of course ‘vaccines’. Or bad discipline. Or many other theories.

Let’s start with the word ‘autism’ itself. It comes from the Greek word ‘autos’ which means ‘self’. The Swiss psychiatrist Eugen Bleuler started using the word in 1911 to refer to a subgroup of symptoms related to what was then considered schizophrenia. It gained a bit more traction in the 1940s in the US. Leo Kanner started to use it about what he considered to be a very small group of children with emotional or social problems.

At the beginning autism was not a ‘spectrum’. It was a very confusing series of isolated conditions that were all considered quite rare. For a while it could have gone either way. Many clinicians preferred to separate the different ‘types’ of autism to show how different the kids were. There was also ‘aspergers’, a term coined by Hans Asperger around the same time. This term referred to children in his clinic he liked to call his ‘little professors’. He was very careful to draw a distinction between them and other children that had intellectual disabilities. His little professors were teachable, and often very bright, just had problems with social isolation and slight quirks. Researchers would contrast this with other forms of ‘autism’ or ‘schizophrenia’.

Other labels also existed, such as PDD (Pervasive Developmental Disorder). And other similar conditions such as Rett Syndrome. Most cases didn’t get any kind of diagnosis at all, and parents did not seek them out. For a long time, only really well-educated and maybe well-connected parents could even ask what was going on with their child.

Eventually, other schools of thought emerged around autism. The new paradigm was of autism as a spectrum. One condition that manifests in many different ways with some common features. People also started to actively seek the label, often because it was linked to funding and early intervention. Other times as a way to explain the feeling of ‘difference’ and find a common identity with others that also have the label.

The incidence of ‘autism’ has soared in recent years. But it is likely that most of this happened as clinicians simply swapped one form of diagnosis for another. The overall percentage of kids diagnosed with a collection of brain development problems that includes autism remained unchanged, suggesting that children who used to be labeled with conditions such as “intellectual disability” were in fact autistic. An autism diagnosis is ever shifting and overlaps with many other conditions such as ADHD.  As the criteria for autism increases, so do the number of cases. Children that were just considered ‘difficult’ or ‘aggressive’ are now meeting the criteria for autism. With increased awareness of autism and more sensitive screening tools, more children are being diagnosed. This does not mean more children have autism than before, though. Just that now they can get help.

Mild, Moderate and Severe Autism

The DSM-5, published in May 2013, is the official publication of the American Psychiatric Association, which defines psychiatric and developmental disorders. The DSM-5 has a set of criteria for autism describing symptoms in the areas of social communication, behavior, flexibility, and sensory sensitivity. If you have symptoms in these areas and they seriously affect your day to day life, you are diagnosed with autism. It is usually diagnosed by a paediatrician specializing in developmental delay, possibly in a clinical team with a speech pathologist and psychologist.

According to current clinical definitions, autism can be Level 1, 2 or 3. It used to be referred to as mild, moderate or severe (and anything in between). The new labels refer to ‘functioning’.

Level 3

Level 3 is considered to ‘require very substantial support’. It refers to children who may or may not be nonverbal. Their often severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. People on level 3 will often have very inflexible behaviour, extreme difficulty coping with change, and will only respond to very direct social approaches.

Level 2

Level 2 refers to children/adults that require ‘substantial support’ with everyday functioning. If you just did a double take with the previous one it’s because the only thing that has changed is the word ‘very’. This will refer to someone that can speak in simple sentences. They may only interact on topics relating to their narrow social interests. They may also act strangely and have odd gestures and body language. There will also be difficulty coping with change, inflexibility of behaviour, and repetitive behaviour. These will occur often enough to be obvious to a casual observer but less clearly than with Level 3.

Level 1

Level 1 refers to children/adults that require ‘support’ with everyday functioning. Without support, some of the deficits listed above become obvious but with supports, they may not be obvious even to a close observer. It should be emphasized though that these supports are still necessary. While children with ‘level 3’ autism are often diagnosed before the age of three, children with level 1 autism may often be diagnosed much later in life. Or not until adulthood. If at all (girls with Level 1 autism often go undiagnosed).

They will have difficulty initiating social interaction and may not respond typically to the social overtures of other children. Sometimes they may not be interested in social interaction at all. But this should not be assumed. Children at Level 1 will often speak in full sentences and have no trouble with spoken communication, but have more trouble with nuances, body language, and unspoken rules. They will often have trouble with back-and-forth conversation and making friends. And will also have trouble coping with change and inflexibility of behaviour, to a lesser degree than Level 2 or 3 but still present. One popular representation of an adult on the spectrum is Sheldon Cooper from Big Bang Theory.

Autism and Intellectual Disability

Intellectual disability used to be referred to as ‘mental retardation’. While this is an offensive term to us today and therefore has been replaced, at the time it was a clinical term with no pejorative meaning. It refers to the ability to reason, problem solve, plan, think abstractly, exercise judgment, and learn. In addition to this it will also refer to ‘life skills’ such as communication, social skills, and self-help skills (things like getting dressed, feeding yourself, handling money, and shopping). Usually both clinical testing and standardized testing is involved but in general an IQ score of 70 or below indicates an intellectual disability. An IQ of 85 to 115 is considered ‘average intelligence’ range. About 1% of the population has an intellectual disability and 10% of people with an intellectual disability are thought to have autism or autistic traits.

As of the most recent prevalence study conducted by the Centers for Disease Control (CDC), which studied records from 2008, 38% of children with ASD had Intellectual Disability. 24% of children with ASD were considered in the borderline range in terms of intellectual ability – an IQ of 71–85. 38% had IQ scores over 85, considered average or above average. Children with Intellectual Disability may require more repetition, including pre-teaching and re-teaching of skills, compared to other children their age.

Issues with IQ tests

Researchers have repeatedly shown that children with autism learn differently. Many do not have an intellectual disability or a low IQ. They are just not tested correctly. Many IQ tests are geared towards verbal reasoning and verbal ability – when many children on the spectrum are tested this way, it may seem they have an intellectual disability. However when they are tested visually (for example with jigsaw puzzles and pictures) and not verbally, they test in the same range as their neurotypical peers.

Other issues with testing intellectual ability also exist. For example some people on the spectrum suffer from dyspraxia. Dyspraxia has to do with motor coordination. An autistic child may understand what they should do to respond to a question but be unable to control their body enough to give a response.

Some problems with labels

Many autistic people dislike labels. The labels high-functioning and low-functioning for example (which refer to similar criteria to those in the DSM listed above) make those that are high-functioning feel like their need for support is being disregarded.

They also often disregard the reality that children and adults may not fit neatly into the DSM criteria.

When Michael was diagnosed, he was diagnosed moderate to severe. So somewhere between Level 2 and 3. This would suggest that he will be able to speak one day, but perhaps not in sentences. It would also suggest very inflexible behaviour, lots of trouble dealing with change, and quite low life skills.

But here’s the thing. Michael is very flexible in his behaviour and loves change. All change. His life skills are improving all the time but he cannot yet feed himself, and he is not toilet trained. He does not speak at all, he is completely nonverbal and does not imitate sounds. He also stims constantly – probably 90% of his day. On the other hand he does not have anxiety and is very easy-going. Michael also can sequence his actions quite easily and if he does understand a word or a situation, he will react quickly. So if he replies incorrectly it is not a motor planning issue.

At the same time he initiates social interactions with peers freely and loves having them around. He just doesn’t quite know what to do with them once they are there. So which labels apply here? Is he mild, moderate or severe? Is there an intellectual disability? Probably – because he has just as much trouble with pictures as he does with words, and because he needs a LOT of repetition and a LOT of re-teaching as he forgets skills incredibly easily if they are not constantly maintained. But he also has ADHD and has trouble attending to a task, which may be the reason that he can’t complete them.

People usually don’t match up to labels

He does not fit neatly into diagnostic criteria. Being a real life human being and not a textbook, that is what one would expect. I can present many examples of children at my therapy centre that do not fit easily into these criteria. One little girl that is nonverbal but has never had any trouble learning categories, understanding books, doing jigsaw puzzles, or any kind of developmental delay (except for verbal communication). Several little boys and little girls whose parents only pushed for an autism diagnosis to get funding, and who do not fit easily into the criteria either.

So are the labels necessary?

In a perfect world, the help that children receive would not be dependant on a diagnosis. Autism or otherwise. There would just be a need for help with specific skills, and funding provided for that. In that case, would labels still be necessary? Or are they offensive?

To me, they are still necessary. Autism is an incredibly ‘stretchy’ concept. Someone can tell me ‘my son has autism’ and it sounds to me as generalized as ‘my son has a vision impairment’. It could mean he is slightly short-sighted and needs to sit at the front of the class and wear glasses. It could mean he was blind from birth and needed to learn the exact amount of steps to get to the kitchen and to get to the traffic lights outside.

In the same way autism can cover everyone from a motivational speaker graduating first in his class at law school, all the way to an adult that needs their nappy changed and has a vocabulary of 10 words. In this case, the word itself has almost no meaning. Yes I would love to explain my son properly to people. Clearly, I like doing so, that’s why I have a whole blog. He is awesome and cheeky and funny and wonderful. But sometimes you just need to explain something quickly using a few words, and then saying moderate to severe autism is just easier. A form of shorthand communication. Shorthand communication will never be entirely accurate and will always miss many (or most) important nuances). But it is still necessary.

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