Autism Severity Scales: The current unofficial ones, and the new DSM-5 one.

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:

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16 Responses to Autism Severity Scales: The current unofficial ones, and the new DSM-5 one.

  1. Nostromoswife says:

    Just did the ATEC for the first time, James got 99 😦

    • That’s hard, and living with that many challenging behaviours must be so very hard too.

      My own son first got a score of 65 (a couple of months after interventions had begun; I don’t know what his worst score would have been). Now, over three years later, he has a score of 18. Each time we introduced a new intervention, I’d make a note of it along-side his ATEC score, to see if it’s had any impact. In my experience, and looking at those scores, language was the key: Once he found a way to communicate, everything else started to improve bit by bit.

      So I can’t say I’ve been where you’ve been, I can only imagine what you’re going through. But I can offer you some hope, that just maybe, your son will improve as much as our son did. No one thought our son would improve as much as he did; there’s always hope. Hang in there xxx

  2. LesleyM says:

    HI there, Thank you for writing this blog. I came across it by accident and have been enjoying your thoughtful posts.

    I certainly see there is at times a need to make a call on the severity of someone’s manifestation of autism, although as you say, someone can be adversely affected in one way and enhanced in another way. In order to get supports, I know I have to play the numbers game so that whoever offering the support can make the call about whether this person is eligible for services, given the limits of funding. Fair enough I guess.

    But what makes me feel irate is that when we use scales to measure people with autism and other disabilities, we are also making other assumptions at the same time, even unconsciously. For reasons i don’t fully understand, i think we humans tend to equate scaled data as also relating to ones worth, eg it is better to be ‘more intelligent’, ‘more wealthy’ etc. And so when you rate someone as ‘more severely’ affected, it is easier to think that person as less worthy, or at least worse off than someone who is not as ‘severely affected’. And for a person who does have significant challenges, I would suggest that they could do with less assumptions being made about their worth by even well meaning people. Even the stance of the person helping a challenged individual can end up feeling condescending and disempowering to the helpee. As a mother of a son on the autism spectrum, i am perpetually dealing with people who seem to pity both my son and I. That doesn’t help me create a better world for us at all.

    I think we need to develop ways of identifying need that do not simultaneously create these other assumptions that colour our attitudes. Why can’t we just be curious and interested in the huge variety of how people are, and help out anyone who needs help because we care about them.

    • Hi Lesley, I’m glad you’re enjoying my blog, thanks for those kind words 🙂

      I can’t speak for others, but personally I’ve never thought less of someone just because of the severity of their disabilities. I’ve only seen it as a way to describe their challenges. I don’t know anyone else who does that either, at least not that they’ve expressly told me. I do know people think less of someone merely because they have a disability at all, which is quite different from concerns about measuring severity levels. I’m also very familiar with those who think anyone with only mild autism who isn’t making the most of their lives, are worse people than those with severe autism who have little or no choice in the matter, which is somewhat in the opposite direction of what you’re talking about. It is interesting though to hear about the viewpoint you’re suggesting; as I say, it’s not one I’m familiar with, but there are all sorts of people – and perspectives – in this world. I’d hate to think though that the perspective of a few nasty individuals – those who think less of someone because of the severity of their disability – would shape the way in which we measure and use measurements of the severity of disability, where those measurements are aimed at assisting those who need help the most.

      Thanks for your thoughtful comment.

  3. Jack says:

    I have always wondered about our children ‘improving’, and making progress in their diagnosis. While not all children follow this path it seems to be somewhat common. Are we as parents chanign our interactions with the child to lessen their anxiety, interactions, diet, etc? Is the child leanring to interact with their environment within the confines of their ability? Is it just an age process? is it the therapies that we bombard our children with? Medication?

    • All of the above can impact of course. Perhaps the most objective way to measure the impact, is with controlled studies, in terms of figuring out if various therapies work better than others and why. At the individual level, it’s a matter of keeping track of improvements when various therapies / interventions are introduced or taken away; trying to spot patterns of improvement. This is harder when multiple therapies are used at a time, as is often the case, in which case it will frequently come down to the parent assessing which interventions the child is responding to best, and which are making things worse.

      My understanding is that there are some autistic children who appear to improve regardless of interventions, and some who don’t improve, again, regardless of interventions. But that the vast majority of autistic children fall between those two extremes.

      It’s an interesting question, and one I think about a lot considering my own son’s significant improvements. I have theories about what worked best for him, based on keeping track of his response to interventions, and how well I know him having been with him everyday of his life. How much more – if any – improvement we’ll see from this point, I simply wouldn’t venture to guess.

  4. jimreeve says:

    Rating scales sound interesting, but I’m not sure if they’re the way to go. It’s hard to say that child 1 needs more help over child 2 because of social/emotional aspects. But they do need something because all kids with an ASD are different. Even kids with aspergers are totally different, in spite of having the same syndrome.

  5. Jim W says:

    I can honestly say, I have no idea whether my daughter would be considered HFA or not. As a result I think i’m sort of in the middle on this one. Probably this surprises you a lot.

  6. mrsstone says:

    Interesting as always. My two are clearly HFA. I suppose where I see the struggle for, in particular my son, is not in his level of functionality perse’. He is verbal, intelligent, learns easily, and is socially motivated, yet his behaviours are more challenging to manage that a friends son whose diagnosis would most likely be LFA. Her son despite the severity of his autism, is a placid and sweet natured child. Very compliant and happy in himself. My son however has an overwhelming desire to control his environment (which is probably motivated by anxiety). He does this by manipulating anticipated responses from others via deliberately defiant behaviours. In the class environment he is difficult to manage, and this of course impacts not just his learning but the others in the class also. So I wonder about how we define levels of function versus level of support needed going forward? If services are linked to level of function rather than behaviours, which they probably need to be for administrative purposes, then my son’s teachers are heading for a world of pain.

    • Hi Sharon.

      What you describe sounds a lot like it would come under “restricted interests and repetitive behaviors” as described in the severity scale. The need to control the environment and people in those environments, often by insisting on routine and on having things a very particular way. Anxiety is reduced by control (at least superficially, not long-term of course), so it’s all related to the resulting expressed behaviour of insisting on things being a certain way and getting very upset when they’re not. Or is it something completely out of those bounds? Just after reading your description, then reading the severity scale, I got the impression it could fit in and be acknowledged there. Possibly.

  7. mrsstone says:

    I have pondered this question. I don’t think it’s so much about rigidity as he’s actually very flexible, and not rule bound at all. It’s more about (I think) finding people confusing and so trying to illicit a predictable response from them, i.e. I do behaviour a) I get response b). And punishments he has decided are easier to work out, as our rules are consistent. So for example I say ‘don’t hit the dog or I will put you in your room”, so he hits the dog the get the anticipated response thus feeling in control. I think the motivation for this compulsion comes from the same anxiety/control dynamic you mention, just manifests slightly differently.

  8. I hadn’t actually heard of (or perhaps didn’t remember hearing of) a severity scale being included in the new DSM-5. From the way you describe it, I think it sounds like a great improvement to have an official scale in place. Like you said, how it actually gets used by professionals is yet to be seen, but hopefully the examples and explanations provided help it to be used reliably.

  9. Patty says:

    This is a great post and gives me a lot to think about. I knew they were changing the guidelines in the DSM-V but I didn’t know about the severity scale. I agree with you–at least now it would be an official scale that could potentially help therapists, schools and other service providers give more appropriate help. It will be interesting to see how this all works out in a couple years.

  10. its one of the most common qu’s I get asked by people about my son ‘where is your child on the spectrum’ or some variation on the theme of ‘how severe is he’. It is such a difficult thing for me to answer. Sometimes I just say ‘HE IS 4!!’ and tell them that my son continues to grow and learn, and every week I see development. I have a peadiatrition appt next week…last time I saw the paed he said ‘your son is almost HFA-but needs a bit more language, a few less meltdowns and a bit more independence.’ That was 6 months ago…I will see what the paed says next week! All in all I like the idea of a formal scale…the sooner the ‘made up’ scales are gone the better in my humble opinion!

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