Concerns about the up-coming changes to the autism criteria in DSM-5, have now seeped their way into the wider autism community, and indeed into the broader public consciousness.
The most popular critiques were originally directed at the loss of existing divisons within the autism spectrum; most especially of the separate category of “Aspergers” (to be folded into autism more generally in the DSM-5). More recently, the focus has turned to the (supposedly high) number of people who may lose an autism diagnosis altogether under the new criteria, and in turn concern over consequent loss of access to government-paid-therapies, special schools, and insurance cover. (Those numbers are highly debatable and hotly contested though, see for example this blogger’s post looking at the recent news stories and issues, and this press release from the APA (pdf).)
I’ve written a few posts already (which I will provide links to where relevant in this post too), looking at and musing over the changes to the criteria. I’m not alarmed by the changes on the whole, in fact I think they’re important and much-needed. So in the face of the recent (and rather alarmist) reactions to the changes, I’ve decided to compile some of my already covered points about why the DSM-5 might actually be awesome, and add in some new ones too. I don’t expect whole-hearted agreement on their goodness, but I think it is important to introduce and consider these points in the face of the current outcry against the changes.
(1) The changes should make it easier to accurately distinguish between giftedness and (what is currently known as) Aspergers. Currently there is some understandable confusion about the line between the two, and the relationship between the two, which has important implications for treatment and the understanding of autism. See my previous post for more detail about how the DSM-IV creates this confusion, and how the DSM-5 may clarify the issue.
(2) The DSM-5 shifts Retts off the autism spectrum (and out of the DSM altogether), and suggests including reference to the cause of autism where known (for example, if it is caused by Fragile X). In both regards, this adds some much needed clarity to the relationship between various conditions and autism. See my previous post expanding on this point: “Genetic origins of Autism; when is autism, not autism? Fragile X and Rett Syndrome.”
(3) Educational services on offer for those with a PDD-NOS or Aspergers diagnosis, are often lesser than those on offer for someone with a classic autism diagnosis, despite that the challenges faced by those with PDD-NOS and Aspergers can be just as challenging as those with classic autism. Bringing all “types” of autism under the same head, would make it harder to continue to give those with Aspergers and PDD-NOS fewer services merely because of that different diagnosis category. (See further: “Understanding the DSM-5 Autism Criteria“)
(4) There is evidently much inconsistency in the way that Aspergers, PDD-NOS and autism are currently diagnosed, across different practices and by different clinicians (see, for example, A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders). The new criteria is aimed at providing that currently missing clarity and consistency, which would in turn make for more consistent and accurate research findings about autism. (For more detail, see the DSM-5 rationale for removing Aspergers.)
(5) The DSM-5 introduces an express severity scale, which should help clarify the currently much argued about and misused notions of “high functioning” and “low functioning” autism. It could become a much more consistently used means by which to acknowledge the different ways in which autism impacts on lives, and in turn tailor services to how much autism is negatively impacting on one’s life, rather than more simplistically to whether they have PDD-NOS (for example) rather than autism. (This ties back into point (3) above.)
(6) The express introduction of reference to “unusual sensory behaviours“. These sensory issues are a significant part of the challenges faced by autistic people; it arguably makes the diagnosis more accurate and complete by having them present as one of the options under criteria B, and it’s important to have them directly referenced within the criteria for the understanding of the disorder and provision of services.
(7) The drastic drop in ASD diagnosis variations from DSM-IV (2027+) to the proposed DSM-5 (just 11), will arguably/conceivably make is easier for researchers to study and draw meaningful conclusions about autism, and for service providers to create and tailor services to those with a diagnosis.
This is obviously not an exhaustive list of benefits – whether actual or expected – of changes to the DSM criteria for autism.
Of course the DSM-5 faces many legitimate challenges from those concerned about the changes to the autism criteria; I am aware of those concerns, and have written previous posts addressing some of them (see for example, “Intent vs Effect re the Exclusion of General Developmental Delay under ASD in the DSM-5” and “The 4 Main DSM-5 Autism Controversies“). I think that it is important though to consider why the changes to the autism criteria are being introduced in the first place, and whether the benefit of those changes outweigh the negatives (I find it difficult to imagine a change to the criteria that would ever make everyone happy when it comes to autism).
On balance, I am of the opinion that these changes are largely beneficial and heading in the right direction, though some of the chosen language in the DSM-5 and the communication of the changes to the general public, have left something to be desired.
The criteria have not been finalised yet; if you’re interested in the DSM-5 process, timeframe, and opportunities to comment on the changes, have a good wander around the official site (particularly see the links under “About DSM-5“).
Autism & Oughtisms 
As usual, great post. Lots to think about.
Thanks Sharon.
Good post.
The wording “not accounted for by general developmental delays” is confusing, children with “Classic Autism” who do not speak generally are described as having “Autism and GDD”.
Now they suggest they are exclusive?
Kanners Autism was where the description started??
Thanks nostromo.
Blogginglily had a similar sort of concern / comment re GDD and ASD under the DSM-5, so I’ve replied to the general point below.
My daughter’s diagnosis is officially PDD NOS, with ADHD. The changes to DSM-IV don’t seem like they’re impact her. She was on the spectrum before, and after the change she’ll remain on the spectrum (based on my interpretation of the diagnostic criteria). Once ON the spectrum, her individual needs are being addressed by therapy/treatment, and attaching a severity number to it won’t change what are already recognized as her weaknesses and delays. I don’t see this change impacting my daughter at all.
I still don’t fully understand what happens to those with ID that lose their ASD diagnosis. Obviously those folks still need services.
The people putting together the DSM-5 insist that it is not their intention to remove those with ID from the autism spectrum. In the rationale for the autism spectrum changes on their site, they expressly include ID as one of the potential associated features that people with autism may have. The problem is that the wording of the criteria as it currently stands lends itself to an interpretation that the presentation of ID might exclude an ASD diagnosis. Basically, the DSM-5 team would need to make the wording clearer or include an express explanation (for example) that ID is not excluded, to stop clinicians making this interpretation error. That’s how I understand the problem anyway; some others think the DSM-5 team actually want to exclude those with ID despite their claim otherwise.
As a side point, even if those with ID did lose the autism diagnosis, they would still have a diagnosis from under the DSM-5 and would therefore still be entitled (one would presume) to a certain (even perhaps greater) level of services and funding.
I think they are going to have to think it through, and word it more carefully otherwise amongst other scenarios it seems to me that the following could apply:
A child with GDD/ID presents with Autistic behaviours, but because of their GDD/ID they are excluded from having ‘Autism’. Later they lose their classification of GDD/ID (and we all know of cases like this) learn to talk, but still display their autistic traits. How would they be categorised now? – the classification further states ‘Autism’ must be present from childhood, and according to the DSM they weren’t Autistic as children so they cannot be now.
Just on the age issue: They do say “Autism spectrum disorder is a neurodevelopmental disorder and must be present from infancy or early childhood, but may not be detected until later..” so there is arguably room there to allow for a later diagnosis as long as it was present from a young age (even if it went by a different name at the time, or was subsumed under GDD/ID). That’s all by-the-by though because, as you say – and I agree – the wording should make it clearer from the outset that GDD/ID isn’t an exclusionary condition for a diagnosis of ASD.
On a slightly related note, and I am just pointing this out and not making any sort of value judgement or saying that I agree, the DSM IV doesn’t really allow an ADHD diagnosis to go along with a PDD one. The DSM IV language is a bit strange but it has this to say about ADHD/autism –
“The symptoms do not happen only during the course of a Pervasive Developmental Disorder, Schizophrenia, or other Psychotic Disorder. ”
While I can’t fathom how a condition that is supposed to be pervasive (autism) might be involved some of the time but not others, the point seems to be clear. If the symptoms of ADHD could be caused by autism then ADHD should not be used.
This restriction does seem to make some sense when you look at the criteria for ADHD because many children with autism are going to have very similar behaviors. For example, does a child not seem to listen (Inattention criteria 3) because of ADHD or because of the disrupted communication in autism?
The upcoming DSM 5 has similar language but has removed the explicit reference to PDD –
“The symptoms do not occur exclusively during the course of schizophrenia or another psychotic disorder and are not better accounted for by another mental disorder (e.g., mood disorder, anxiety disorder, dissociative disorder, or a personality disorder).”
It is complete plausible, at least to me, that autism could be considered “another mental disorder”. So the DSM 5 seems to also frown upon giving a diagnosis of autism and ADHD.
And yet, even though the DSM doesn’t seem to allow it, the practice of giving a diagnosis of autism and ADHD seems to be quite common. I know a number of children first hand who have this dual diagnosis. One of my daughters with PDD-NOS might fit into this category as well – she has problems with focus and attention that seem to go above and beyond what could be related to her autism.
So the question, for me at least, is whether these restrictions in the DSM are meant to be more of a warning or a hard dividing line. Is the point that the DSM says you can’t have both of these at once or is it more a strongly worded hint to make sure that the symptoms aren’t better explained by something else.
Maybe this is what the authors of the DSM 5 are trying to do with ID and autism? Maybe they are trying to give a hint to consider whether a child has a GDD/ID that leads to some of the behaviors of autism or whether they have autism which leads to the appearance of ID?
Great comment MJ.
I was aware that ADHD and ASD weren’t meant to be diagnosed together (and equally aware that they frequently are), but I hadn’t yet looked into how that would change under the DSM-5, thank you for bringing up the issue directly. My son doesn’t have ADHD so I really don’t know much about the condition, but I am interested in the question / issue of co-occuring conditions and the impact they have on an autism diagnosis. Definitely food for thought there.
I personally dislike the Asperger’s Syndrome diagnosis – for many it has become synonymous with autism-lite, and belittles the very significant life-challenges people like me face.
My concern is people with Aspergers who’ve largely succeeded at blending in, when they’re wondering ‘Why do I see the world differently than everyone else?’ may be excluded from the best answer. Having that information, while it may require no pharmaceutical treatment, can lend a lot of peace of mind. The sort of thing an old fashioned or very insightful doctor might care about.
I agree that the DSM-V has some bright spots, however, it has some serious problems that you haven’t touched on yet.
I am a single parent with 8 yo twins currently dx on the spectrum. It was a long hard road to get proper diagnosis with medical professionals who prefer to “wait & see” or who decided to believe I was hypochondriac instead of helping. I was extremely persistent and that’s the only reason they are getting any kind of therapy or support. That tells me there are still significant numbers of kids out there who are missing the benefit of proper diagnosis that would lead them to early interventions. I believe that this is especially true for high functioning girls.
My ds is dx with HFA. It took until he was 4.5yo to get him assessed and dx. Our doctors & therapists all agree that ASD is an appropriate dx. Under the DSM-V criteria he would not meet the criteria of ASD. He does not exhibit “at least two repetitive behaviors”. With therapy we’ve been able to significantly reduce meltdowns. The only typically autistic repetative behavior that
he exhibits is that he will bang his head when he is really upset in a tantrum. I’m happy to say that is a rare occurance these days but I don’t understand why this particular sensory based behavior was singled out by the writers of the new DSM? Why not any of the miriads of other sensory based behaviors. He shows plenty of those. When I talked to his pediatrician about this new criteria her response was “well if that is the case then we’ll find a way to get around that”. So already doctors who know these kids are having to plan how to keep the kids in the correct dx.
DS shows lack of eye contact, ambivalence toward others (lacking theory of mind), he has little understanding of language pragmatics, PICA, CAPD, visual motor deficits, he is unable to perform basic self-care tasks or follow directions that entail more than 1 or 2 simple steps yet is reading and comprehending at the 6th grade level. Today he receives special education in an integrated setting & a very small monthly $ support from the state (<4% of actual costs). He would be able to access more support if his IQ were <70 which is the state requirement for assistance. As it is, to get the meager support he receives I had to provide assessments that prove his adaptive skills functioning is equivalent to a peer with <70 IQ. He currently is seeing 4 therapists per week all out of pocket at this point. Plus in order to continue working I utilize specialized childcare through private self-pay Respite services as typical childcare refuse to take him. All of his services, whether private or public depend on his having a diagnosis of ASD. If he looses support in school my only option for him would be homeschool which would mean I couldn't work. If he looses access to respite services I could not maintain a job either. So you see, just with one child's situation this could be devastating to our family.
DD is currently dx with Asperger's after years of mis-diagnosis on top of the other delays my son experienced. The dr who dx'd her at age 7 was furious that she had been misdx previously as "dev delay unspecified with sensory issues" because it was obvious to her that the subjective nature of the current DSM-IV does not take into account the differences between male & female social development (something the new DSMV also ignores). DD was clearly delayed compared to girls her age but maybe not so much compared to boys. As a result DD had her IEP terminated 1.5y early by the school district so lost all public school support in kindergarten. I put her in a private school because, though they don't have special education resources, they would at least support DD by using an FM system if I provided it- without it she only understands at best 60% of what is spoken to her in a typical classroom setting…something public school wouldn't do without an IEP in place. She does not receive state aid because her adaptive skills tests came back 1 point too high in one area. Still, I have kept her in private therapy, the same 4 per week that her brother also sees, and yes, also out of pocket. She also does not exhibit "at least 2 repetitive behaviors". On occasion she will line up toys but not consistently. She also is able to utilize the private pay Respite services because of her dx, a service that would be lost to her if her dx were not considered an ASD.
So, am I concerned about the new DSM-V criteria? You bet I am! Not because we would directly loose large sums of $ support but because it would exclude us from basic self-pay supports that could plunge my family into extreme poverty, leave me without needed respite, and potentially endanger my children's long term prognosis. We're already living on the edge because all of this is self-pay.
newday, you say the DSM-5 has some serious issues thatI haven’t touched on, then didn’t actually say what those were, could you please clarify?
Also, you seem to be focusing on the criteria B (1) in terms of required repetitive behaviours, please note there is also 2, 3 and 4 that your children might come under, it’s really quite broad: http://www.dsm5.org/ProposedRevisions/Page/proposedrevision.aspx?rid=94
Also, it is in no way surprising that your doctor would be willing to label your child whatever is required to get them (and you) the help they need; you might find it interesting to read an earlier post of mine referring to this trend: https://autismandoughtisms.wordpress.com/2011/07/22/ill-call-a-kid-a-zebra-recognising-fashionable-autism/
(And on a side note (pet peeve) it’s DSM-5 not DSM-V, they’ve dropped the roman numeral.)
I do appreciate your passion and of course I understand your concerns; I’m a mother of a child who was once severely autistic (now rather more moderately autistic). I had to fight for him and for his services too, that is – unfortunately – the usual way of things for us parents of autistic children these days.
Thank you for your comment and for sharing your experiences.
A&O
I alluded to the concerns about DSM-5 but you are right, I can communicate them more directly:
1. DSM-5 as it is currently written is likely to perpetuate the behavior of a misinformed medical community. With a more restrictive definition/criteria those who currently (& incorrectly) hold a “wait & see” for high functioning children are likely to not only continue to do the same but to broaden that behavior to children whom they might have previously referred for evaluation.
2. DSM-5 as it is currently written does not address a significant issue of female under/late diagnosis for high functioning ASD because it does nothing to address the issue of female versus male social development in early childhood. It does not normalize the assessments or make the assessment process more objective.
3. DSM-5 as it is currently written is overly focused on repetitive behaviors and restrictive interests and as such is likely to exclude high functioning individuals who otherwise exhibit all of the other behaviors and impacts associated with autism. The authors seem to believe that repetitive behaviors are the primary reason for social impairments to the exclusion of other symptoms that impair social skills equally if not more.
I’m sorry but your link did not work for me. If this is what you were trying to point to http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94# it is overly focused on repetitive and restrictive behaviors. All 3 levels of severity depend on the an assumption that the repetitive & restrictive behaviors are the cause of social impairment.
level 3= Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly
level 2=RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest
level 1=Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.
Current research and interviews of adults with autism reveal that repetative behaviors are largely done in response to sensory differences. They are used either to a) sooth oneself from an overstimulating sensory environment b) sooth oneself from an understimulating sensory environment or c) sooth oneself from overwhelming social/emotional situations. Other protective responses to such situations might be fleeing from the environment; covering ones eyes, ears, or nose in unusual response; hyperactivity to self stimulate and so on which would not be recognized as “repetitive” behaviors (ie. flapping, spinning, toe walking, head banging, strict rituals, etc).
I can say definitively in my children’s cases that their social impairments are not due to repetitive behaviors or intensively restricted areas of focus. They are instead due to a) lack of developing theory of mind (simply put no empathy or interest in other people) for my son and b) absense of social pragmatics for both children. My daughter desires to make friends and attempts to make friends but her inability to understand, follow, react to, social cues or to allow others to have their own desires make her unsuccessful at sustaining relationships. My son is completely ambivilous to others and beyond initial introductions (usually inappropriate & ackward) is uninterested in others.
Both fit the general descriptions: under the topic Autism Spectrum Disorder under the tab “proposed revision”. Must meet criteria A, B, C, and D but neither fit any of the severity levels 1, 2, or 3 which are, in my opinion overly dependent on restrictive & repetitive behaviors as the supposed cause for social deficits.
Regarding our dr’s response to try to get around an overly restrictive diagnostic criteria, I don’t believe it is so motivated by trying to ensure we get support (our supports are minimal as it is) as it is the belief that these kids truly are autistic and flaws in the diagnostic criteria should not exclude them from proper diagnosis let alone services.
If DSM 5 thing changes. Do you think I will have to get new paper work to keep me support and cares that I have. Cause I like things how they are, I am doing very well now. This is confusing and I wish I could understand what it all means.
Can you delete last comment, I spelt my name wrong by accident and I do not like it looking wrong. I like it the right way 🙂
Hi mattyangel,
I suspect the changes won’t affect your supports, since your support needs won’t have changed even if the label attached to them does. In my experience the New Zealand focus is on needs rather than label, so you should be OK. If you’re particularly worried it might be worth talking to your specialist or the relevant government department, but I strongly expect they won’t know how to answer you until any such changes to the diagnosis actually take effect. I’d suspect that even after they do take effect, that it would take a while for the “authorities” to figure out what it means and how to respond to it in terms of services, so any affect this has on you is likely to be years away, and hopefully it won’t affect you at all.
And yes, I’ve deleted the comment when you spelt the name wrong, not a problem 🙂
DSM5 is the North American diagnostic manual and is a companion to the more widely used World Health Organizations ICD (International classifiaction of diseases). DSM-IV (1994) and ICD-10 (1994) was a collaborative effort between the working groups for autism for both manuals. The controversy over DSM5 published set of criteria currently undergoing field trials has spilled over to the DSM and ICD working groups for autism and ir would appear that the 2013 deadline for the simultaneous publication of DSM5 and ICD-11 is not within reach.
.
Sir Michael Rutter heads the ICD-11 working group for autism and has this to say:
‘At the moment there are important differences between proposals for DSM-5 and ICD-11. For the most part, there is broad agreement on the overall concepts but there are difficulties with respect to the details. That arises most especially because the DSM-5 starts with dealing with research criteria before considering the concepts and WHO does it the opposite way round. That is to say, the starting point with WHO is the clinical conceptualisation and the clinical criteria. At a later point, of course, research criteria have to be developed but that comes secondarily. In my view, that is the most appropriate way round’.
AND :
‘The current proposals for DSM-5 would make a huge difference to prevalence estimates of ASD. That is because the field trials analyses undertaken by Fred Volkmar and his research group have shown that the majority of higher functioning cases (such as with Aspergers syndrome) would be excluded. There is a paper on this that is currently ‘in press’ in the Journal of the American Academy of Child and Adolescent Psychiatry. I hope that these findings will lead to a change of proposal for DSM-V’.
Intrerestingly Rutter also had this to say:
‘The increase in the prevalence figures for ASD are certainly due in part to improved clinical sensitivity and ascertainment and partly the broadening of the diagnostic concept. However, whether, in addition, there has been a true rise in incidence remains uncertain. I think it is important to keep an open mind on this because, if there has been a true rise, that would have implications for some non-genetic factor playing a role, probably a contributory role, in causation’.
hese staments were conatined in an interview for a Spanish Autism Confewrence to be held in Valencia next July.
http://www.itasd.org/index.php?option=com_content&view=article&id=38%3Amichaelrutterinterview&catid=8&Itemid=7&lang=en
A doctor’s perspective in how it will affect children currently diagnosed with autism and their supports. He does not think it will be good.
Very well written and interesting. Thank you for your viewpoints.
Thank you Aspergers Girls 🙂
I just think it’s messed that doctors don’t talk to people with autism about their diet.
Doctors do talk to people with autism about their diet. I’m not at all clear what you’re trying to assert here. Are you trying to say that talking about their diet is not part of the diagnosis process? Which is correct, it isn’t required to meet the criteria. Or are you saying all autism is linked with diet problems? To the extent that sensory issues and limited diets are involved, diet is almost always part of the ongoing discussion around dealing with autism. Or are you trying to say autism is a dietary issue in itself? Which is simply not supported by the science yet; some autistic people have gut and diet deficiency issues, but it is not a universal marker. Perhaps you’d like to clarify your concern?
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