Autism does not affect each autistic individual to the same extent. For some it is extraordinarily debilitating on a daily basis, and even life-threatening at times (due to factors like self-injurious behaviours, and certain interests and inabilities meaning a much higher likelihood of drownings and wandering). For others, autism does create extra challenges and obstacles, but they can care for and communicate for themselves; they are not wholly dependent on others, and are even capable of having jobs and forming their own families.
In an effort to recognise and respond to these diverse realities, people have been using “unofficial” severity scales. Some use the language of high and low functioning. Some use terms like severe, moderate, or mild, to describe the impact of autism on the individual. To a large extent, people have considered reference to different types of autism as itself a type of severity scale: Considering Aspergers and PDD-NOS as less severe versions of autism, for instance.
The problems with these unofficial severity scales, are numerous, but there are two main concerns that come up in conversations on this topic:
(1) References to severity scales in autism, over-simplify the diverse abilities and challenges each individual carries. For example, someone who communicates extremely well, both verbally and in the written word, but struggles daily with high anxiety, multiple sensory issues, and social interactions. Whereby in some ways autism is not impacting severely on their functioning, but in other ways it is, so that any single overarching reference to their severity level would be distorting and inaccurate.
(2) References to severity (high, low, severe, mild, etc) are used inconsistently, since there is no official reference point that everyone is using. So when one person talks about their child being high-functioning, they might not consider someone else’s child to be high-functioning even though the other parent also uses that term. There are a variety of tools one might use to rate the severity of autism – such as by using ATEC – but these are not universally used and can also overly simplify the diverse strengths and weaknesses in each autistic individual.
However, for all the problems that occur in references to severity, there still needs to be some way to identify and refer to the spectrum of needs. The fact is the differences are there, and often times the differences can be so profound that for some autism is clearly an extreme disability and for others it is viewed as a clear and desirable advantage. Trying to get appropriate and adequate supports to those who need it, cannot be achieved simply by the lable “autism;” professionals, governments, insurers, and newly diagnosed families, need some way to figure out how to respond appropriately to the diagnosis of autism.
Even for those who believe there is never an appropriate reason to refer to the severity of autism, there must surely be recognition that if people insist on making such references, it should be against some sort of consistent scale, so that people are to some extent at least referring to the same phenomenon (however imprecise it may be).
The DSM-5 – the updated diagnostic manual which is due to come into effect next year – introduces an official severity scale for autism. The scale is split into two sections: “social communication,” and “restricted interests and repetitive behaviours.” This reflects the new criteria for a diagnosis of autism, which is also split into these two areas of challenges. There are three severity levels for each of those two sections: Level 3, requiring very substantial support, Level 2, requiring substantial support, and Level 1, requiring support. Under each section and level, are provided explanations and examples, to assist the application and provide some consistency.
My son, for example would be between Levels 1 and 2 under both sections. He was once very clearly in Level 3. No one would have struggled to place him under Level 3 in both areas at the time of diagnosis, and for a good year afterwards: The most severe cases are typically the easiest to identify and to apply a severity scale to. As the severity of my son’s autism has lessened, he has slipped down the severity scale, which makes it harder to place him exactly in one category or the other, but either way it is clear he is no longer at Level 3, and that is a meaningful observation.
How the scale will precisely be applied, is something that will take time and experience to figure out, and is likely to differ somewhat between various professionals. It is however something which can be studied to identify if it has been applied consistently, and something which can be perfected over time with more guidelines and examples to aid professionals. Either way, it provides a more consistent and meaningful reference point than the current very wide-spread use of unofficial severity scales.
It is also important to consider the impact that the removal of Aspergers and PDD-NOS (and other categories), will have on the category of “autism.” The introduction of an official severity scale allows recognition of the differences once recognised by those different groupings, as many of those individuals will now fold into the new single category of “autism.” (For those who are concerned more generally about the removal of reference to these other conditions, I have links to my other posts on these and related topics around the DSM-5, at the bottom of this post).
I understand the concerns many have about the use of any severity scale for autism. But in light of the very clear fact that people are already using unofficial scales, and that multiple professional bodies require some sort of scale in order to get services to those who need them most, I am not opposed to the effort to introduce a severity scale into the DSM-5 section on autism. I think it is a reasonable response to the removal of other conditions from the spectrum, and an improvement on the status quo. I think it fixes many of the problems people have with an autism severity scale at all, by being split into two sections and by having examples and explanations built-in. I also know I am in the minority in these views, since I’m yet to come across others praising the introduction of the severity scale, but I hope some who read my post will perhaps think twice about whether it really is a horrible idea, or whether the introduction of an official severity scale is perhaps a step in the right direction.
My previous posts on the DSM-5:
- Autism in the ICD-10/ ICD-11 vs the DSM-IV/ DSM-5.
- Allen Frances on the Problems with the Primacy of Diagnosis, and the DSM-5.
- Scientists or Service Providers; Critiquing the Choice of Targets in the Attacks on the DSM-5 Autism Changes.
- A Few Good Reasons to like the DSM-5 Autism Changes.
- Intent vs Effect re the Exclusion of General Developmental Delay under Autism in the DSM-5.
- Drastic Drop in ASD diagnosis variations from DSM-IV to the proposed DSM-5.
- Distinguishing Giftedness from Aspergers; will the DSM-5 help?
- The 4 Main DSM-5 Autism Controversies.
- Genetic Origins of Autism; when is autism not autism? Fragile X and Rett syndrome (looking at how the DSM-5 will treat them differently, and why).