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Who Will Be Autistic in 2013? Learn More About the New Diagnostic Criteria

By May 27, 2011

As many of you know, the American Psychiatric Association is in the process of revamping the DSM - the diagnostic manual that names and describes the symptoms of mental, neurological and developmental disorders for practitioners in the United States and, to some degree, in other nations.  The present criteria for Autism Spectrum Disorders are in for some huge changes if the proposed criteria are approved.  Some of these changes include the removal of the categories Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and Asperger Syndrome.  The new criteria for Autism Spectrum Disorder are quite different, too: many people who were once included in that group will no longer fit the criteria.

Meanwhile, a whole slew of new and related disorders and categories are listed, including, among others:

You'll want to explore the entire proposed DSM-V, but for now you may be interested in the criteria for Autism Spectrum Disorder, below.  As you'll see, the emphasis is on perseverative and repetitive behaviors - and there is some very odd language that seems to suggest that a person with "general developmental delays" may not also be eligible for an autism diagnosis.   From what I can tell, my son - who has significant language and social communication issues but few perseverative or repetitive behaviors, and presently has a PDD-NOS  - will no longer fit into the autism category.  He may, instead, wind up with a Social Communication Disorder diagnosis.

If you're like me, you're teeming with questions.  Will my child (or I) need to be rediagnosed?  If so, what will a different diagnosis mean to me or to the services, treatments and educational program I now have in place?  If I have Asperger syndrome, will I now be "autistic?"  Or will I fit into a completely different category?   If my child has anxiety in addition to autism spectrum symptoms, will he be dually diagnosed?  I have requested an interview with a representative of the committee, and hope to find out much more about the new criteria and what they will mean to us.  This is just the first of many blogs and articles I'll be writing on this topic!

Proposed New Criteria for Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

Comments
May 27, 2011 at 11:49 am
(1) Malia says:

Within the changes in the specifics describing “restricted, repetitive patterns of behavior, interests, or activities,” I think my son would probably now fit the DSM criteria for Autism Spectrum Disorder. As I’ve mentioned in previous comments, my son’s PDD-NOS diagnosis was, like Tom’s, based on a lack of sufficient repetitive behaviors to meet the criteria for autism spectrum disorder in the DSM-IV. Now, however, echolalia appears to been reclassified as being part of section B rather than section A. Sensory issues are also described under section B, so now my son would have easily demonstrated two of the four criteria described under section B.

Where he might loose his diagnosis is whether or not, in the opinion of those assessing him, these factors still impair his everyday functioning enough to qualify him under section D… which leaves me to wonder whether they’ve opened the door for the possibility of “growing out” of an autism diagnosis.

May 27, 2011 at 1:45 pm
(2) Rethink Autism says:

Just posted on this. I think it’s going to be interesting to see how policy changes concerning dispersing autism services.

Some states, like Texas and Florida, do not provide services for students with Aspergers, but they do provide services for students with an autism diagnosis.

Every interesting, thank you for the level of detail.

May 27, 2011 at 7:51 pm
(3) Cindy says:

Having lived in Florida for 16 years and having a son diagnosed with Asperger Syndrome, I can tell you definitively that the schools do provide services for children diagnosed with Asperger’s.

I, too, will be watching the changes and wondering where that will leave our family.

May 27, 2011 at 9:06 pm
(4) Rethinkautism says:

Thanks for the correction- my mistake! Glad to hear that kids with Asperger’s are getting what they need!

May 27, 2011 at 3:54 pm
(5) Stuart Duncan says:

The real problem is that not only do you and I have these questions, so do doctors!
Far too many doctors already don’t know very much about autism and now the whole thing is going to get a huge overhaul.

May 27, 2011 at 4:14 pm
(6) L Osborne says:

I think a lot will hinge on how they DEFINE “restricted, repetitive patterns of behavior, interests, or activities”. My son has a PDD-NOS diagnosis right now. His restricted, repetetive patterns of behavior, interests, or activites were misdiagnosed for years as “tics” and “obsessions”. That doesn’t look the same as, say, a child who rocks in a corner or can tell you everything there is to know about Ford automobiles because that is all he can focus on.

My concern is what will happen to the children who have a diagnosis from an Autism Center evaluation, have been receiving services that have been beneficial, and thus may no longer exhibit the severity of symptoms they had prior to intervention? In our case, my 17 year old can now make eye contact and has learned many social “rules”, which make it harder to imagine the way he operated socially prior to intervention. Will that now prevent him from qualifying under the new DSM criteria–and thus, unable to get continued services? He is still just as disabled as he was before.

May 27, 2011 at 5:24 pm
(7) barbaraj says:

I see the changes, now can anyone explain to me the motive? We have children that suffer harm, their individual responses vary, some are more affected than others, and now we divide them up into little categories, we don’t even allow for staging the way in which some diseases are handled. In line with our discussion concerning the courts this week, I can expect aspergers can join sociopathy and eveyone knows there’s no funding nor sympathy for sociopaths, we’ve lined them up next to evil and possessed. Maybe that’s where this is heading?

May 27, 2011 at 7:49 pm
(8) Brenda says:

Barbaraj: As a therapist working with kids all over the spectrum, I see how difficult it is to distinguish subtypes. It is also evident that kids do learn and grow and their place on the spectrum can change. I look at the individual and try to affect such change. Removing subtypes, in my opinion, forces us to look at an individual’s unque manifestation of ASD and not a label. His individual skills and deficits would determine what services he needs and what he is able to accomplish. I don’t know what the motivation of the authors is, but this is what would motivate me to support a broad ASD diagnosis. A child with Asperger’s would then be recognized as having an ASD, not spociopathy, and what he needs would be addressed, no exceptions for aspies in those states which deny services to them.

May 28, 2011 at 7:58 am
(9) ts says:

These changes will better diagnosis children not over diagnose. I see many children diagnosed with autism in wisconsin because the doctors know they will get services and then once they get that diagnosis no other cause for their delays is considered.

May 28, 2011 at 8:52 am
(10) barbaraj says:

Yes Brenda, I believe I’m following you, where a broad definition may not be necessary to the “authors”, for the children it would be best to allow them all in under the umbrella definition of asd , then treat them as individuals with weaknesses and strengths, provide the help they need to grow as members of society.
In my house we are ,as we grow and develop, seeing a need for services for some of the other children. This year, when my six year old turned six, he lost his speech therapy, and while his therapist knew he was “within” the acceptable guidelines for six and had to drop him per IEP, she fully expects him to be outside again at seven and back into therapy. This is ludicrous and unacceptable, and this is the kind of nonsense that new guidelines bring . While one side is screaming for early intervention, the “small print” may suggest your three,four, five year old has not grown out of the acceptable arena , and may not be eligible for intervention at all until he does, delaying treatment .

May 28, 2011 at 8:56 am
(11) Cathleen McCormick says:

As an autism specialist in a school system, in a state where insurance has to pay for autism services, I am very concerned with the proposed criteria. We work very hard to improve a child’s social skills and inflexibility. From what I am reading the improvements we strive for may disqualify a student. Autism is a Neurobiological disorder which cannot be cured.

May 28, 2011 at 12:15 pm
(12) Dee says:

Actually the latest research from UCSD is showing that if you catch it early enough and have a responder to intensive treatment, 3-25% of very young children can have their brains re-wired… Thus effectively remediating the disorder. We can argue till the cows come home as to which word is most appropriate to use here… Cure, recovery, remediation… The bottom line is that intensive early intervention is averting later brain changes.

May 31, 2011 at 1:03 pm
(13) vmgillen says:

I went through serious BS because “it wasn’t caught early” – because programs were not available – and spents more tha a decade fighting for behaviour-based intervention. It can be done at later ages; think of stroke victims and their compensatory brain-rewiring. There is a good base of studies with adult patients, with more added constantly.

May 28, 2011 at 3:14 pm
(14) Malia says:

Regardless of whether or not one believes “curing” autism is possible, I really have no problem in services being withdrawn from individuals whose everyday functioning is no longer impaired by their autism. Put another way… if the improvements in social skills and flexibility strived for by the treatments are accomplished to a degree that their everyday functioning is no longer impaired, why would the child need to have those services continued?

May 28, 2011 at 11:28 am
(15) J. Brian Harris, Ph.D., P.E. says:

I wrote a comment of 1854 characters, only to be informed that my comment needs to be between 10 and 2000 characters in length.
I am autistic, and I find my being autistic is a normal condition for me.
Therefore, this is my last attempt to post a comment here.
This comment checks out as being 289 characters. I am curious as to whether it will get posted.

May 28, 2011 at 3:23 pm
(16) Malia says:

This system counts spaces as characters, so the message above is considered by the system to have 356 characters, not 289. The original message of 1854 characters without space was likely over 2000 characters when the spaces were added in… i.e. not due to an in consistency in the counting abilities of the system.

I agree with barbaraj – using the cut and paste method, dividing longer posts into two is the easiest solution… and I’d love to be able to read your more detailed input.

May 28, 2011 at 11:55 am
(17) barbaraj says:

I don’t know why that is , but often I have the comment box turn yellow and have to divide the message into two parts and post each individually. I’d love to read your input, could you try again?

May 28, 2011 at 9:27 pm
(18) Twyla says:

A new political party was launched yesterday:
http://www.canaryparty.org/index.php?option=com_content&view=article&id=22&Itemid=29

This party platform does not take stands on war or the economy. Rather, it addresses issues of health, safety, scientific integrity, freedom to make medical choices.

People can join the Canary Party while remaining members of their own political parties — whether Republican, Democrat, Tea Party, Green Party, Libertarian, Independant, or any other.

What does this have to do with the changing definition of autism? A whole lot. The basic causes for and prevention of autism will only be uncovered with scientific freedom and integrity. Only then can autism really be defined and understood.

May 28, 2011 at 9:31 pm
(19) autism says:

Sorry about the character count issue; I’ve run into it myself with longer comments. I’m afraid I don’t have any power to change that aspect of the site; sorry for the inconvenience.

Lisa

May 28, 2011 at 9:51 pm
(20) Bronwyn says:

I agree with Brenda that if the general diagnosis gets us away from focusing on subtypes and focusing more on the needs of the individual that would be a good thing.

I think the problems with the changes to the DSM are not in relation to what they mean for the definition themselves & how clinicians may work … but how they will be used (and abused) by government and health insurance as a means of limiting access to funding and services.

May 29, 2011 at 3:06 am
(21) Sally Thibault says:

H Lisa – Great blog! I have a 25year old son who was diagnosed with Asperger’s syndrome in 1997 and through a long and sometimes difficult process he has recently graduated from University and just recently started his new career – he managed to gain employment when many of his fellow graduates have not! My concern is this, I speak often to parent/teacher groups about Asperger’s syndrome and quite honestly the concerns we had, which were difficulty in social interaction, speech, bullying etc. are often very different from those diagnosed with Autism, and especially those of high need. Whilst David was Ascertained at the highest level and received support in school, which was essential for him to survive in the system, and he also received support at University from the Disability assistance department, I often feel concerned for parents who have far greater needs for their children than we did. Will this change in the Diagnostic criteria adversely affect those who are really struggling with care and have concerns about their children who may not be able to live independently? And then at the same time stop the much needed funds going to children who are diagnosed with Asperger’s and who will be able to live independent lives IF and only IF they receive adequate support and intervention early in their lives. For parents this whole issue is tough enough without bringing in all the new criteria. In the end it is about support for those who need it.

May 29, 2011 at 8:32 am
(22) autism says:

I’m not quite sure where I stand on these changes – need to hear a whole lot more about how they are to be interpreted, used, coded, etc.

On the one hand, from a personal point of view, I’d rather have my child receive a diagnosis that pinpoints his specific developmental problems rather than a diagnosis as broad as “autism spectrum disorder.”

That’s largely because, in order to “make sense” of autism, schools and others create a sort of template of “the autistic child” to provide training etc. Problem is, that template doesn’t fit Tom – so he receives services he doesn’t need (piles of OT and help with sensory issues he doesn’t have), but at the same time doesn’t receive that speech/language support he DOES need.

On the other hand, the worries I have about this relate to medical coding, availability of treatment, and the weird wording that seems to break out people with intellectual disabilities from the autism spectrum. I’m also worried about aspies, who have developed a real sense of community and may wind up losing such a critically important support.

All of this, too, will take a LONG time to shake down, and meanwhile EVERYONE involved with parenting, treating, teaching and managing will be confused, leading to longer wait times and more red tape… I’d love to think all that will be thought through and planned for ahead of time, but I’m not holding my breath!

Sigh…

Lisa

May 30, 2011 at 11:09 am
(23) Megan says:

I’m torn on this as well. My son, Paul, fits into the “classic autism” category. He is primarily non-verbal and when he does speak he has lots of trouble with how to use his voice and pronunciation. He self injures, avoids almost all social interaction with verbal children and has lots of sensory issues. He still isn’t potty trained and we’ve been told he may not fully master this skill given the depth of his issues. I sometimes get frustrated when I talk to parents in the autism community and it feels like children like Paul have been pushed almost to the sidelines of the autism community because of the broad nature of the definition. More children seem to fall into the PDD-NOS and Asbergers category. Sometimes it does feel like Paul has a completely separate condition then other children in those categories.On the other hand that’s my personal feelings talking, and I might feel very differently if I was parent of child with PDD-NOS who may lose out on services because they are not officially autistic. I guess I would need to do lots more research to have a strong opinion.

May 30, 2011 at 12:21 pm
(24) Kimberly Ann says:

Megan, I feel the same way! My son has moderate autism. Not mild, not severe, right in the middle. I get frustrated when someone tells me thier child has autism and they had friends come sleep over. WHAT? Oh, they had aspergers…it kind of diminishes what autism is in my sons life. That’s just me as a mom dealing with the struggles we have as my sons disability is obvious. He is more than socially quirky. I don’t mean to diminish the struggles apergers folks have to overcome, but there is a huge difference than the autism we as a family deal with. Labels are lables only. We do not qualify for services besides what the school has to offer. Our insurance doesn’t pay for anything extra, and my husband makes too much $$ to qualify for ssi. )Yet we live pay day to pay day) My concern is for my son and his futuer :)

May 30, 2011 at 12:25 pm
(25) autism says:

Kimberly – and families like ours (my son is also moderate) have very little in common with families who says “my son is non-verbal, not potty trained, and is so aggressive I’m afraid to live with him!”

We are, in many ways, all living in different worlds.

Lisa

May 30, 2011 at 8:23 pm
(26) Nat says:

My daughter has PDD-NOS, and whilst I recognise that she is less autistic than, say your son, there may be many things which are shared, by them and us, as parents/carers. Isolation, frustration, stress, depression, loneliness, general vunerability and sensitivity. Since gaining a diagnosis when she was 6 (she is now 9 but is so much younger, both in intellectual, academic and emotional terms) I no longer feel like I am going mad….I’ve yet to discover if how these new guidelines will affect us here in the UK, but I know that no family can afford to lose out. For some, without supportive network of family and friends, it is all they have.

May 30, 2011 at 11:36 am
(27) Lauren says:

My daughter has Non Verbal Learning Disability. I’m so confused if this is presently considered on the Autism spectrum-I haven’t been able to get an answer from professionals.

Secondly, I haven’t seen NVLD be mentioned to be included in the new category(ies).

I know that NVLD has some distinct differences but overlaps Autism in many ways. Any insight from you out there would be appreciated!

May 30, 2011 at 11:41 am
(28) autism says:

NVLD is not an official autism spectrum disorder. ASD’s are pervasive developmental disorders, which generally include issues with fine and gross motor development along with the issues included in NVLD.

Having said that, there really is no absolute distinction. I’m not sure whether new social communication disorder category will wind up incorporating NVLD, and am guessing that it’s likely.

Lisa

May 30, 2011 at 3:04 pm
(29) Sandy says:

How many people have their child’s diagnosis re-evaluated every so many years? I don’t think anyone’s current diagnosis would automatically change once these new criteria’s go into place and as for a public school, their criteria often is never the same as the DSM anyway. And school services are based on individual needs, not so much diagnosis. Now if they go and revise IDEA again, that’s a different story.

Often as a child progresses and get’s older, the diagnosis often does change. Often as kids with autism get older, they do age out of some services and programs. It doesn’t mean they still don’t have autism, it just means for many, interventions have worked for them and they’ve learned ways to cope.

So changes in the new DSM isn’t really a big deal to me for kids currently diagnosed. Where I see it’s going to make an impact is for those much younger children, ages one through three getting the very first evaluation.

May 30, 2011 at 10:44 pm
(30) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

Actually, by law and standards (in every state, and every industrialized nation), your label automatically updates when the definitions do. My label’s changed no less than three times as a result of this, without any re-evaluation necessary, mostly because of the varying details on the difference between Asperger’s Syndrome and Autism (the ONLY differences between those two labels now are that AS has an IQ minimum, and AS requires that NO speech or communication delays are present, at all, for any reason whatsoever, not even ear infections). THAT is why the labels are being merged, and why they SHOULD be merged. It would make it far more difficult for legislators to throw up red tape.

May 31, 2011 at 1:35 am
(31) Kim Harp says:

?????!!!! My Autistic son (high functioning)will still fit the criteria, but I am VERY concerned as to what they will do with all the Aspies out there. My other son is Aspergian and ssoooo different to his brother that I would hate to see them all lumped into one catergory????
Does anyone know if the Aspergers diagnosis will be plonked in with the Autism Diagnosis or is it going to become a stand alone label????
I will be watching very closely.

May 31, 2011 at 7:46 am
(32) bestephens says:

Even though my son was diagnosed with Asperger’s, even with the changes, he still fits! I am self-diagnosed adult Aspergian, who wonders now if I was/am…but since ‘intensity’ (of interest) is included with ‘abnormal social approach’ and I could never keep a friend more than one play date…I will say yes!
Him and I have are now past the prime for services, but it feels good to know that we are not just crazy!

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