Monday, June 6, 2011

Social Communication Disorder - A new category in DSM 5

This post was chosen as an Editor's Selection for ResearchBlogging.orgA couple of weeks ago, I posted on a paper by Mandy and colleagues, which aimed to better characterise kids meeting current (DSM IV-TR) criteria for PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). Their conclusion was that most of these kids had social and communication difficulties but not the repetitive and stereotyped behaviours (RSBs) that would have given them a full 'autistic disorder' diagnosis.

Under proposed revisions to diagnostic criteria (DSM 5), PDD-NOS is supposed to be subsumed by a broader category of "Autism Spectrum Disorder". However, Mandy et al.  pointed out that the proposed criteria for Autism Spectrum Disorder require evidence of RSBs, and so would actually exclude most of their PDD-NOS kids.


In a new paper, Prof Francesca Happe, a member of the DSM-5 working group, outlines the rationale for the proposed DSM 5 changes affecting autism spectrum disorders. The paper overlaps to a large extent with her excellent blogpost on the SFARI website. However, she also references the Mandy et al. paper, acknowledging that many individuals with PDD-NOS may miss out on an Autism Spectrum Disorder diagnosis because they don't have repetitive or stereotyped behaviours.

Here's what she has to say:
“Recently, Mandy et al. raised concerns that many children currently receiving [a PDD-NOS] diagnosis will not meet proposed DSM-5 criteria for ASD because of a lack of restricted / repetitive behaviour. For these children, the proposed new neurodevelopmental diagnostic category of social communication disorder will be relevant. This diagnosis, it is hoped, will more clearly and accurately capture the pattern of impaired social and communication abilities seen in the largest subgroup now labeled PDD-NOS”.
On the DSM 5 website, the new disorder is defined more formally:
"Social Communication Disorder (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability."
Effectively, SCD seems to be official recognition for what researchers and practitioners have previously referred to as "Pragmatic Language Impairment" rather than a replacement for PDD-NOS. The emphasis is very much on the communication side of things, particularly conversation skills, with a suggestion that social difficulties are a secondary consequence of impaired communication. That's my interpretation at least.

As Happé suggests, it seems likely that many people who currently reside in the PDD-NOS pigeon hole would meet the SCD criteria. However, I'm not sure that the criteria necessarily capture the extent of the issues they face. As Will Mandy mentioned in his comment to my post:
"Our clinical experience is that children with PDD-NOS (i.e. mainly individuals with severe autistic social-communication difficulties, but without high levels of repetitive and stereotyped behaviours) are similar to those with a full autism diagnosis in terms of their functional impairment."
How this will all play out in practice in terms of access to services and interventions, I don't pretend to know. I'd certainly welcome comments from people better informed than I.


Update [29/01/13]: SCD is now definitely included in DSM-5 and does appear to be a replacement for PDD-NOS but is classified as a language disorder rather than a "relative" of autism. More details here.


Reference

Happé F (2011). Criteria, Categories, and Continua: Autism and Related Disorders in DSM-5. Journal of the American Academy of Child and Adolescent Psychiatry, 50 (6), 540-2 PMID: 21621137

Related posts

What is PDD-NOS?

Further reading

Dorothy Bishop: Pragmatic language impairment: A correlate of SLI, a distinct subgroup, or part of the autistic continuum? [PDF]

26 comments:

  1. As the mother of a 2 year old with pdd-nos this is an interesting issue. And is certainly cause for concern that many children under current funding guidelines may no longer be eligible for financial government support and therapy. Re. my son I suspect he may still warrant an ASD diagnosis under the DSMV criteria. But I would expect to see an increase in ASD prevalence statistically as Drs choose an ASD diagnosis over a PDF diagnosis in order to ensure the child can receive funding for services.

    ReplyDelete
  2. Just one thing to throw into the mix. Andrew Whitehouse and I recently published a pair of papers reporting adult outcomes of children with either specific language impairment, PLI or autism. Outcomes were better for PLI than for autism, with greater likelihood of getting qualifications, living independently and holding down a job. This was a small sample, and biased because recruited via language units/special schools. But it makes me query whether we should just lump PLI in with ASD, as the prognosis does seem quite a bit better for those without repetitive behaviours. And the impression was that these children did well in special education placements that focused on language and communication skills. There may well be commonalities between PLI and ASD in terms of symptoms and causes, but for educational/clinical purposes, they seem worth differentiating.
    References:
    Whitehouse, A. J. O., Line, E. A., Watt, H. J., & Bishop, D. V. M. (2009). Qualitative aspects of developmental language impairment relates to language and literacy outcome in adulthood. International Journal of Language and Communication Disorders, 44, 489-510.
    Whitehouse, A. J. O., Watt, H. J., Line, E. A., & Bishop, D. V. M. (2009). Adult psychosocial outcomes of children with specific language impairment, pragmatic language impairment and autism. International Journal of Language and Communication Disorders, 44, 511-528.
    PS The relevant articles ought to be Open Access, but I’ve just checked and there’s a paywall. I’ll get this sorted, but meanwhile, anyone who can’t get them should email anneka.holden@psy.ox.ac.uk for copies:

    ReplyDelete
  3. PS. You can get hold of these articles via this link:
    http://tinyurl.com/3lp8hv5

    ReplyDelete
  4. Dorothy Bishop published a study that retrospectively applied current gold standard diagnostic instruments (ADOS-G and ADI-R) to a group of adults who had been diagnosed with a developmental language disorder in childhood and found that given the broadening of diagnostic criteria that has taken place over the last 15 years, diagnostic substitution was indeed taking place.

    http://www.ncbi.nlm.nih.gov/pubmed/18384386

    Isabelle Rapin, a child neurologist at the Albert Einstein School of Medicine at Columbia University and who has published numerous articles in such journals as the New England Journal of Medicine is one of the leading clinicians and researchers in the US published an article in SFARI Autism and gave a thoughtful commentary on the ambiguity of current autism definition:

    https://sfari.org/viewpoint/-/asset_publisher/Jb6r/content/isabelle-rapin-lessons-from-my-clinic

    ReplyDelete
  5. A couple of people have contacted me to say that they've had difficulty commenting. I'm not sure what the problem is, but if you are writing a long comment, it might be a good idea to make a copy (eg in a Word document) before hitting submit. Otherwise there's a chance it might never be seen again!

    Thanks to Sharon, Dorothy and RAJ for the comments that have made it through.

    ReplyDelete
  6. What to do re adults who clearly met autism diagnostic criteria as children, but may not as adults? (given that many adults do *not* have a formal childhood diangosis of autism?) .

    Under DSM-V criteria, I was autistic needing considerable support as a child, but I'm not sure if I would be diagnosable with ASD at all now. I was diagnosed at 13 or 14 (unusual for a 40yo!) - but only after several clearly wrong diagnoses (eg childhood psychosis). Both of my parents are now dead. Complicating things further, I also have an Acquired Brain Injury.

    ReplyDelete
  7. This comment has been removed by a blog administrator.

    ReplyDelete
  8. Hi Maria. That's a tough question. Not sure I know the answer. When you say you are not diagnosable now, is that because you have changed so much or just because diagnosing adults is generally impractical?

    ReplyDelete
    Replies
    1. I agree Maria and Jon, those are tough questions. The proposed DSM-5 criteria state that symptoms must be present in early childhood but that they may not be 'fully manifest' at that time. For some adults seeking diagnosis, for whom symptoms were not problematic until later in life, I think that it may be difficult to confirm whether symptoms were present in childhood.

      Delete
  9. maybe grown-ups get to choose their own labels.

    ReplyDelete
  10. Brock syndrome is easily diagnosed. And hereditary too.

    ReplyDelete
  11. I'm so sorry....;)

    ReplyDelete
  12. Fantastic! My 8 year old just got into the Autism program in my state. She is finally learning!!! I fought for 5 years to get her in, she is is 8, entering the 4th grade but because of the special ed program she was in that had no clue how to teach her she is educationally somewhere between pre k and Kindergarten. She has PDD-NOS and now I may lose her educational placement! This is insane!! In states like mine where you have to fight for years for an educational placement where your child can learn this will hurt SO many of us!!

    ReplyDelete
  13. The concern that I have is that it seems like most of the kids that have been diagnosed with PDD NOS under the DSM 4 criteria will no longer qualify under the DSM 5 criteria. Does anybody know if insurance companies or the states will be required to cover children if the new diagnoses of social communication disorder goes through in regards to therapies and services that are provided?

    ReplyDelete
  14. As an attorney that helps folks access insurance coverage for ASD therapies, I can pretty certain that children who no longer fall within the scope of the new definition will also no longer have a right to coverage for ABA and other therapies under state insurance mandates. Its a big problem that we need to figure out how to address. By the time the mandates are revised and start to compel coverage (possibly) for social communication disorder, many children will lose access to much needed insurance benefits. Jodi Bouer, Esq. Bouer Law LLC

    ReplyDelete
  15. This is very diss appointing news. I am quite sure my son has pdd-nos, although he is not diagnosed. Last year I attempted to have him diagnosed, but either his dr would refer him to someone and then my son's insurance would turn it down or the insurance would approve and when I called to make an appointment it would turn out that he was too young for the professional to see him. He is now 5 and has been in counseling for a year. There are some attachment issues with one of his parents (he has a mom, dad, step-mom, and step-dad), which causes some of his issues, but at this time his counselor is saying that she has worked with both types of children (RAD and pdd-nos)and she suspects that most of his issues are reflective of pdd-nos. She is saying that while there are some attachment issues, they seem mild compared to the children with RAD she has worked with in the past. The problem with the new DSM-V criteria is that he will neither fit under autism spectrum or social communication disorder. He didn't learn to talk until 3, but then he had explosive speech and now has a rather large vocabulary and often sounds like a 35 year old man. We do still see repetitive behaviors (hand flapping, constant humming, spinning in circles), difficulty in interacting with peers and adults, lots of sensory issues, tantrums and outbursts that include thrashing around and attempting to overturn furniture, and difficulty with emotion (he either has emotional extremes or seems indifferent, there is no middle ground with him). But given that there aren't huge communication problems (aside from being a late talker), I'm not sure where he will fit when the new diagnostic criteria come out. Also, not sure where this leaves us. I know he needs help since his behaviors impair his daily functioning as well as family life.

    ReplyDelete
    Replies
    1. If i were you i would insist on getting a diagnostic assessment. He may well fit the criteria by what you have described.

      Delete
    2. If you have not already, request an evaluation by a school psychologist at your son's school. Often times educational verification requirements are not the same as medical diagnosis.

      Delete
  16. I live in Delaware. At 3 my son received services from the public school system for early interventiin at rthe recommendation of his pediatrician. He was too young to officially diagnose with anything at that age. Was super smart, spoke but was delayed and didnt like to communicate and often had temper tantrums. He was main streamed into public school. In 1st grade he had his offificial evaluation after a full day of testing. His diagnosis is pdd-nos. I, personally would not be unhappy if the pdd-nos diagnosis was unlinked from autism. Reasons I give are that teachers are uneducated and they link the two far too often. I have had special ed and other teachers mention my sons autism during reviews, to which I need to explain his diagnosis. This inaccurate labeling has afforded him nothung but special treatment and consideration when what he really needs are clearly defined rules and expectatiins. My son no longer has a speech delay, is still very smart, although he struggles with math. He will still over react, even at 9, if he gets frustrated, but this is a tactic that has proven effective for him.in school so I assume as long as he is treated as a labeled.child, he will behave like a labeled child. I am all fir autism interventiin and special services, but we must be very careful when labeling.

    ReplyDelete
  17. I am mother to an 9 y/o with a dx of PDD/NOS. I am also an MSW and I can understand that as a parent you don't want to classify your child as "autistic" because of the sterotype the dx has. However, if it quacks it's a duck. If a child has any symptoms on the list, then they should be entitled to therapy, treatments and funding.

    My son was on a 2yr waiting list, because I work and have insurance and not state HI. During this time the public school CORE'd him and because he was Pre-K he was placed in an intergrated class and DX was "developmental delay with PDD/NOS charactertics." He did 2 years of kindergarten and by the end of his 1st grade year his independent came in as Autistic/PDD-NOS. I had a long talk with the diagnosising clincian and we both agreed. As much as it is heartbreaking to hear your child is on the ASD, you need to be realistic to the needs they may encounter through out the school career. Struggles are overcome and new ones crop up. You want to be able to have services and say in your child's ED plan. You want them to have considerations for standardized testings, which often incorporate promotion, in higher grades...the list goes on. I agree with above that most just need defined rules and explainations. However, if your child is not on an ED plan, because the DX no longer requires them to be, your child could wind up lost.
    It is also no mystery that big Health Insurance companies have a vested interest in the 2013 DSM. Autism is like the ADD ADHD of the 80's and 90's...every child has a DX? With health care reform and many states passing Autism laws, this was only in the cards, that the "mild" or "invisble" autism diagnosis, would be dump to the wayside.

    Fingers crossed the this new "lable" will still provide for our children. This social worker/mother is not very hopeful.

    ReplyDelete
  18. I am the mother of 2 children diagnosed with mild ASD...they are 10 and 8 years old now, and were diagnosed at the ages of 2 1/2 and 3 1/2 respectively. BOTH didn't speak beyond "baby talk" until age 4!

    My 10 year old had an initial CARS rating of 31.5, and has since been re-evaluated and has a PDD-NOS rating of 28. He has been in regular education classrooms for the past 3 years without an aide or learning support and doing fantastic. For him, I believe the social communication disorder Dx will better match his issues.

    My 8 year old was initially ranked at 34 on the CARS scale, and like his older brother has communication issues, and prefers non-verbal means for communicating wants and needs. He is hyperlexic and has a photographic memory.

    Unless you try and speak to my boys, you would never know just looking at them that they had autism. They have no other telltale signs, and this has been the hardest part to digest as parents, especially when meeting other children who are obviously more affected. I actually feel guilty even saying my children have autism when I see what other parents are dealing with, and because of that I have always told people when meeting them that they were either very shy, introverted, or had a speech delay, since their primary issue was speech related, and it was easier than saying they had autism.

    We have had them in speech and social skills groups since they were 3 years old--mostly paid for out of pocket, including RDI--Relationship Development Intervention (Dr. Steven Gutstein).

    Since starting the RDI program we have seen MAJOR changes in their social language development. I feel as though the new SCD dx will be better for those children on the mild end of the spectrum and who have very specific needs, and as a result RDI, social skills and speech therapy programs are going to be very much needed!

    ReplyDelete
  19. This is interesting. I was diagnosed with Aspergers, which always seemed accurate, though I don't have repetitive behaviours or social communication difficulties (under the right pressures many autistics learn to lie and manipulate fluently). So under DSM 5 I would have no diagnosis at all, yet I have executive dysfuntion that makes it incredibly difficult to tidy my house, make plans for the future or navigate new terrain. Pretty standard adult Aspergers having outgrown the visible symptoms. I suppose I don't *need* a diagnosis but I always thought these classifications were used in statistics saying how many people had a condition, not how many needed a diagnosis.

    Btw, your captchas are the hardest I've ever seen, I needed six attempts.

    ReplyDelete
  20. Hi, I'm recently been told I probably have social communication disorder. I'm struggling to understand its meaning as I'm incredibly articulate and have very fluent speech (perhaps too fluent). As an adult how does this manifest and what can yu do about it?

    ReplyDelete
  21. What type of therapy is recommended for SCD? My 16yo has been classified Autistic/Asperger's by the school and SCD by a psychiatrist. He rarely talks socially and doesn't ever write. It's as if their is a complete disconnect between his brain, his thoughts and his pencil. He's flunking out of school, and no one, including myself, knows how to educate him.

    ReplyDelete
    Replies
    1. Hi Christine. This recent post from Autism Speaks might be useful:
      http://www.autismspeaks.org/blog/2014/01/31/social-communication-disorder-parents-seek-guidance

      Delete
  22. Good Post. truly It takes such a lot time to push and find traffic from social media, the matter is it ne'er consistent. we must always take into account Organic searches whereas victimization social name and obtaining links from smart social networks like Google and will not simply provide some traffic however conjointly smart links to diary.

    ReplyDelete