Monday, January 23, 2012

What will the new DSM definition of autism mean to us?



There’s been a lot of talk about how the upcoming DSM V definition of autism will affect people on the spectrum.   Last week’s news stories really got people talking, especially when one doctors suggested 75% of today’s Asperger population would not qualify for a diagnosis under the new definitions.

Let me say at the outset, I think that 75% statement is inaccurate, and a substantial over-reaction to the available data.

Many in the community were already upset at the DSM V proposal to combine the various autistic conditions under the single category of autism spectrum disorder.  Any change in diagnostic terms or definitions is worrisome to those who depend on receiving diagnostic-specific supports from schools, social service agencies, or health care providers.

In the following paragraphs, I’d like to look at the proposed definition of ASD, and then consider what it may mean for those on the spectrum and their families.

This is the proposed definition of ASD.  For a person to be diagnosed, they 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.

As you can see, the ASD definition above is very similar to, and clearly derived from, the DSM IV definitions it will replace.  Given its similarity, I think it’s an over-reaction to suggest that any large portion of the current diagnosed population would “lose their diagnosis.”  People with Asperger’s or PDD NOS will have to obtain a new diagnosis if the depend on it for services, but I don’t think that will be a problem.

The primary mission of any clinician is to help others.  That belief make me think those clinicians will be looking at today’s Asperger and PDD NOS people and thinking, “What do I have to do to help this person?”  Most clinicians are on our side, after all.  

All of the criteria remain subjective.  That means clinicians still have great latitude in defining phrases like “symptoms impair everyday functioning.”  A clinician who diagnosed a person with an ASD condition under DSM IV is not at all likely to withdraw that diagnosis today.  I do think there will be upheaval, schools and others send people with Asperger or PDD NOS diagnoses are sent back to clinicians for re-evaluation under the new guidelines. 

I have no doubt that process will be troublesome, costly, and time consuming but I doubt very much it will result in people who had a disability diagnosis coming out with nothing.  

A doctor who thinks you or your son is on the spectrum is not likely to revise that opinion, just because the wording of the definition changes.  My experience of human nature reassures me on that point, even though I know insurers and school districts are pushing in the other direction.

In my opinion, the biggest change in the new definition is the addition of a severity grade.  Here is how they define level 1, the least severe affect:

A - Without supports in place, deficits in social communication cause noticeable impairments.  Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others.  May appear to have decreased interest in social interactions.

B - 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.

Once again, the definition is very open-ended and subjective.  For example, the word “supports” could be taken to mean many different things.  Once again, I think clinicians will retain wide diagnostic latitude.  To me, that suggests that most people who have a diagnosis, will have an ASD diagnosis under the new definition.  And a kid who is diagnosed on the spectrum today, will still be ASD next year when this change takes effect.

I do understand why people express concern, when they say words like that might be interpreted very narrowly for the purpose of reducing the number of individuals diagnosed.  However, I do not think that was or is the intent of the framers of the ASD definition.

All that aside, I do think people who receive services face a real threat of interruption or disruption when this change takes place.  Not because they “won’t have a diagnosis,” or for any clinical reason.  Rather, I think people with autism are at risk to lose services because ignorant, ethically challenged, or financially pressured bureaucrats will use the diagnostic evolution as justification for changes that may benefit some other group at our expense.  Obviously, not every government official or service provider will think this way, but some surely will, and we need to both be on guard and continue to raise awareness about this risk.

For this is the real threat to the autistic population, from the DSM changes.  "Losing a diagnosis" is a red herring.

Many school are already using any loophole they can find to escape IEPs and their obligations under the spirit of the law.  State social service agencies can be even worse.  A big change like this could make that kind of treatment easier for them to justify and perpetrate, and that is bad.

For that reason, I urge all of you to speak up before your government officials, school boards, and elsewhere to make sure they know that a change in diagnostic wording does not in any way change our need for support.  Even if the diagnostic codes numbers change, their obligation to provide educational, social, medical and therapeutic services should remain unchanged.  If the government chooses to require people to obtain a new diagnosis to suit the new DSM, I absolutely feel it is their agencies' responsibility to pay for same, and continue services until obtained.  That is a point we must make very clear - lest this become a barefaced resource grab when the change takes effect.

I look forward to the day we have solid tests for autism, but even then, I am sure the fight with social services and schools will continue.  Because it all comes down to money, in the end.  Our various government departments  - both State and Federal - have not yet made the funding choices to fully support the population we have identified today, let alone the folks who are yet to be diagnosed.


23 comments:

Valerie Foley said...

John, I think that is the most sensible viewminhave seen on this issue, so far.

I can completely understand the fear that services will be lost, but I also completely support the idea that autism is autism, and each individual should receive services apprpriate to them, not to their diagnosis.

I guess I will have to eat my hopeful words if the doomsayers turn out to be right, but I thank you for taking the time to share your thoughts.

:)

Heidi said...

Hi John Elder
I am glad you chimed in on this discussion. I have seen the diagnosis of ASD grow from 1971, when I first began working with kids diagnosed with Autism. These were the Kannerian kids, mostly non-verbal, with alot of stimming etc. I worked in private and public school programs for many many years, as an SLP and also a movement therapist. I also worked as an ASD specialist for the Ma. DOE ( a truly impossible job, as you might imagine). I no longer can work in schools where $$, or supposed lack of it, made me use criteria that dropped the higher end kids from an already bulging caseload. I could not stay because I cared about the kids and their families, have been working for 42 years, way before a spectrum, and told the truth about what I thought each student needed. Needless to say, several administrators did not appreciate my sitting around the IEP or parent conference table.
Now, I am expanding my private practice to assist families with Autism to help them learn how to co-create communication, home/school supports etc. I have removed myself from the fray.
Actually, I live in Hatfield and would love to meet and maybe brainstorm how I can be of best service to the community. I am thinking that newly daignosed adults might need someone to talk with about what effected them growing up and how to reclaim what may have been lost.
So, there is a big chunk of information as well as a much appreciated thank you.
Sincerely,
Heidi Ehrenreich, hydeco22@gmail.com

vintagesue said...

my son is still systems in check....A-D...all the way! i figure a spectrum kid is always a spectrum kid...no matter how the definition changes over time. my son would have an ASD diagnoses today as he did 7 years ago. i am thankful the definition still supports who my son is. he has consistently met those spectrum criteria for years now. they don't just disappear.....that said.....
thank you so much for your continued support and enthusiastic approach to all things spectrum disorders. you inspire and inform my family and i'm grateful for your ability to not only inform, but understand what our children go through as they continue to grow up on this always challenging autism spectrum.
a very thankful fan!!!

Dena Gassner said...

I agree; I do believe that without note of processing deficits, working memory deficits, issues with perspective taking and executive function we do risk going back to ADHD hell and maltreatment as a result. However, the range and breadth of this new description is far better. We got sensory and food differences which is HUGE! I do worry that most of this is indeed, subjective based on observation. If you have been conditioned by society and family, you may not "appear" anything..my diagnostics included multiple instruments with the decision based on common consistencies between them all. The other problem is, if you don't know/think you have it, how do you know what to report? Are you not reporting fully due to shame? Instruments are desperately needed, I totally agree. I have a psychologist I collaborate with and we are 100% so far at finding it even when outsiders might not. We're proud of that record.

Donal von Griffyn said...

One of the most troubling phrases in the new criteria for me, as an autistic, is "not accounted for by general developmental delays". All though my school career I was considered developmentally delayed and learning disabled, but NOT autistic. DSM-IV changed this, but only after I had dropped out of 3 colleges which could not assist my education due to their treating me as 'just dyslexic'. It is also worrysome in that recent studies suggest 2.5 as the age at which autism diagnosis should be considered since by age 5 most of the behavioral patterns have been set. This critical 2 and a half year span is the same timeframe in which those 'general developmental delays' occur. This leads me to conclude that the early diagnosis, which researchers are calling critical to successful treatment, will not be accepted as there is no clear differentiation at that age between persistent neurological development issues and the general developmental delays.

Rather than breaking down autism into a series of smaller disorders based upon an individual's place on the spectrum and their coping mechanisms as developed at home, I prefer to combine those on the spectrum so that we have the power of numbers on our side when the time comes to fight for our rights.

It is already hard enough trying to live in a neurotypical world, telling me that I am not like you diagnostically because we fall on different places on the spectrum is like saying that a 'lesbian' is not 'gay' because they are not a male-attracted-to-male.

Maybe I'm just being too autistic and failing to see a larger picture form the details, but after 40 years of fighting with doctors to get services I have my own views on the subject.

DSM-IV was far from perfect, but I feel that DSM-5 is a step in the wrong direction. And Mr. Robison, you have had a FAR better experience with people than I have if you think we, as autistics, will not be hurt or denied when this change comes around. I suspect it will take a decade or so before we see enough benefits from these criteria changes to off-set the harm that will be done to our youth in the mean time.

For what it's worth, I hope I'm wrong.

John Elder Robison said...

Donal, in my post I do say I think we are at risk. Thought I made that clear, even though I do not think people will "lose their diagnosis" as many have suggested online

dc said...

John,

For people without insurance and the means for RE-testing this becomes a medical and social injustice. This will cut down on diagnosis and numbers simply because some children and adults will not be able to be RE diagnosed. Also, the people with insurance and means as well as those without should not have to drag their children through the emotionally painful process of RE evaluation.

This is a way for schools and insurance companies to continue the practice of thumbing their noses at Aspergers and PDD-NOS diagnosis.

I have never in my lifetime seen a RECALL on a medical diagnosis. This is outrageous.

For me to even suggest to my 20 year old son that he must now go back and be re-evaluated and justify his diagnosis after all we have been through...

And on top of that our psychologist is a thorough and professional Dr.who has already made an appropriate diagnosis.

Face it, "they" don't like the Autism numbers and so now we say Oh just kidding, you don't really have Aspergers.
I always respect your opinion and usually agree with you but this time Your cup is half full while mine is half empty.

sincerely,
Debra

John Elder Robison said...

Debra, it is all conjecture, but I do not think the framers of the DSM have made this revision for the purpose of causing hardship. However, that will be the result for some people, for sure.

Your idea that "your son's diagnosis was recalled" is troubling, for sure. However, it's not clear that the state service agencies can just pull services because the manual and its associated codes changed.

I certainly hope families like yours come through with minimal disruption. My big point is, we cannon anticipate everything but for the most part the clinicians are on our side. You too have good points about insurance and who should pay, and we'll just have to see.

Thanks for your thoughts

Me said...

My son was diagnosed PDD-NOS at 2 years of age, yet it is thought he is probably Asperger, and in the year since his diagnosis this looks more and more likely. Looking at the proposed new criteria he will have no problem meeting it, and he is mildy affected compared to most others. If someone does not meet the criteria listed I wonder if the original dx was correct in relation to children?
However I do appreciate that adults who have learnt to manage/mask their symptoms would have some valid concerns.

Teresa Britton said...

Unlike the last commenter, I don't think this change is for benign reasons.

In this article (link below), the chairman of the task force making the revisions says “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder, It involves a use of treatment resources. It becomes a cost issue.” That is absolutely shocking to me!

As parents, we know our kids are not just "a little odd." I can't believe this person could be in charge of a task like this.

http://www.nytimes.com/2012/01/21/us/as-specialists-debate-autism-some-parents-watch-closely.html?pagewanted=all

Gil Mora said...

I think the last 2 lines of your post - "Because it all comes down to money, in the end. Our various government departments - both State and Federal - have not yet made the funding choices to fully support the population we have identified today, let alone the folks who are yet to be diagnosed." - is the crux of the debate, 'money'. It costs money to provide special education to students, let alone providing training to teachers. I like the new 'label' because it inserts the word 'Spectrum' and to me that provides lots of leeway. I personally don't like being labeled with somebody's last name, i.e. Asperger.

Madmother said...

My son, when diagnosed at a young age, would have met A- D.

Now at nearly 14 it would be doubtful. We have had intensive therapy and intervention, and whilst the behaviours and sensisitvities are there, they are hidden or coped with.

It is hard to have ASD in the real world, we have helped him with tools and strategies and support for over a decade.

And now he is a gorgeous young man on the cusp of adulthood. Is he still on the spectrum? Hell yes!

Eileen said...

What about all the hard work that those in their early and late 20’s have done to learn to appear more social and less obvious as being Autistic. Through years and years of behavior modification some of the diagnostic elements can be modified so the Aspie can appear more socially normal. What about the adult that struggles to maintain composure and will not show the childhood symptoms of ASD and has to be RE-Tested to RE-Obtain the services they have used and should still be entitled to use. Their hard work has not made them LESS austic but they will appear that way and potentially lose any of the assistance they will require to continue their difficult job of fitting into our normal society. You don’t really believe that someone in an insurance company or school district will “entitle” someone for services when they don’t fit the criteria. Look down the road, pay for it now or pay for it later. This would be unheard of for a physical condition it would be barbaric to weed out those who aren’t the sickest or most affected by an illness. When does a diabetic not become a diabetic? With tenacious work they may be able to reduce their dependence on insulin but they will always be diabetic. It’s the same with ASD why should they have to re-qualify because the DSM V changed in mid-life? What a foolish change in the guidelines.

Unknown said...

I wrote up a long analysis of what the DSM definition change will mean to us - http://ianology.wordpress.com/2012/01/25/autism-diagnostic-criteria-in-dsm-v/

The invented link between label and the level of need is a real educational issue, and we may need better capacity in the funding agencies to be able to differentiate levels of need, regardless of labels.

QueenoftheOwls said...

Dear John: Like you, I was diagnosed as an aspie late in life, but I always knew I was different. I just didn't know the name for it.I have read your article and I agree with it wholeheartedly. The new criteria strike me as not much different than the old, and I recognize myself in both. However, I am aware that in the autism community there is much upset and agitation from people who fear that they or their children will lose their diagnosis. Now, it seems to be that if a person is autistic, they are autistic and will remain so no matter what language is used in the DSM, but I would guess that the main concern here is accessibility to services and resources.I suspect that in this economy resources are scarce and there is pressure upon the DSM committee to see that they are allocated to those with the greatest impairments. I guess much of the concerns parents have been expressing really goes over my head because, like you, I grew up in a world where I was not considered disabled but rather a gifted child with behavioral problems.Back in the sixties it would not have occurred to anyone that an aspie kid should be given special indulgences; in fact, my teachers treated me quite harshly because they felt that a bright kid (and a bright girl!) such as I should know better than to misbehave as I did.
Because much was expected of me as a child, I struggled to do better and did do better. Later in life, when people began to view me as disabled, mentally ill or simply lazy and incompetent, I fell right in line with that assessment and fell flat on my face..If I had a child with Asperger's, I would not want him treated as if he were disabled; I would want him challenged to do better.

EnjoyHi5!Autism said...

Thanks. Relevant, objective, unbiased. Will join and share 'Look Me In The Eye' blog and J. E. Robinson books

M said...

i'm probably in a minority of one on this issue: i would be relieved to lose my diagnosis. i've felt only bitterness about it, after being diagnosed as an adult. it's been a real struggle to come to terms with the diagnosis, the fact that i'll be the way i am for the rest of my life.

i definitely worry that many people will lose services, but personally, i'm all for the proposed changes.

Pjohnson said...

M,
I don't know entirely about others, but while I haven't been officially diagnosed (just informally diagnosed by the psychiatrists and social workers who've helped my son gain services), I'm actually finding relief in knowing why my mind works the way it does, . I'd be who I am diagnosis or not, but knowing the "why" always gives me relief.

Plus, with my son's diagnosis (as well as two nephews), I feel like the fact I'm now almost 40, and the older I get the more I feel like the person I'm meant to be, maybe it'll help my son some inspiration to get past a potentially difficult childhood.

On another note, John, I want you to know that when my son was officially diagnosed, I searched iTunes for the term "Asperger" and your Fresh Air interview was the first thing that went up. From there, I found your book, Look Me in the Eye, and just a month ago, I found Be Different. It's given me some relief that we are instinctually doing things right with our son, it's explaining why every professional that meets my husband and me is unofficially diagnosing us in the spectrum with him, and it lets us know we're kind of instinctually doing some things at home right to help him along. It also helps explain why our daughter, who's not on the spectrum, gets so frustrated with the lot of us, ha!

Be Different is now required reading in our house (and with my mother, since 3 of her 5 grandchildren are on the spectrum).

So, I just wanted to take this opportunity to say thank you.

Paula

Celestial said...

It will be a pain to have to find another person to redo the diagnosis for me, but as my current diagnosis has caused me to be looked over for aid... I certainly would not mind having to go back through it all again to get one that fits, and can get me the help I need.

I need aid, and a lot of it. I cannot work, and that really is not me just saying that to get out of it... with my current diagnosis, the people who could help me, refuse to even try. They do not believe it is autism, even though i have personally given them the information on it.

If I can get my diagnosis changed to something simpler, and more obvious, I am ALL for it.

Sarah McQuilkin said...

John,
Thanks so much for posting this. My eyes are opened much wider now.

Optimist said...

Love reading these comments. Couple of things: 1. Please understand that even though the public school is not the Cadillac, not the premium - it is free and appropriate - there are those of us who work our butts off to educate our colleagues, be active in our community, and dispel myths that accompany differences of any type. I've read posts about therapists who have "gotten out," but if we don't have good support in the trenches I can't tell you how many more injustices students might face. So even though at times our system is flawed and we can never find enough time, I work very hard to make as much progress as is humanly possible in helping all students increase self-awareness, self-advocacy, and success at school no matter what the difference. 2. Unfortunately I feel that some people need a reason to be bitter. Some people need to be pessimistic. Some people need to avoid dealing with their own biases, and they need something or someone to blame. I am aware that this change might cause hardship for some; however, do we never rise to the challenge and succeed even in the face of change? If we think we can, we will. If we use this as a reason to stay "stuck," then we will create even more barriers for ourselves and our loved ones. 3. Honestly, with the level of awareness much higher today than it ever has been in the past, I believe we stand a better chance of making sure we continue to advocate for people who might be on the cusp of this change so that everyone gets what they need. As a mother, my hope is that no matter how this change goes, parents continue to feel empowered to tackle their goals and the goals they have for their children and not let semantics stop them.

Jacki Cucinotta said...

My name is Jacki Cucinotta. I am a senior at Curry College in Milton, MA, majoring in biology. I am also in the school’s Honors Program, and I am actually writing a thesis which examines the debate concerning whether or not Asperger syndrome should remain on the autism spectrum. This topic is extremely important to me because I have Asperger syndrome, which I was diagnosed with at the age of six.

At this point I am looking to find individuals with any autism spectrum disorder (including Asperger syndrome, aka AS) to interview for my thesis. All information will be entirely confidential. If anybody is willing to be part of this interview process, please comment on this post or e-mail me at jcucinot2009@curry.edu. I really look forward to these interviews and discovering new insight related to AS.

Thank you,
Jacki Cucinotta

P.S. The blog is awesome! Keep up the great work! As for this post, I love how you are mentioning that Aspies are not taken out of the picture because we are not - it's simply making the autism spectrum more inclusive. I can still see how this revision has it's drawbacks (I was honestly against the revision at first because I thought it would affect the treatment options that may be given because it seems to lump autism, AS, and PDD-NOS together), but after your insight, I feel that this might be beneficial for everyone on the spectrum.

Heather Bassett said...

Mr. Robison, it is always immensely soothing to read your extremely easygoing, rational and pragmatic take on such potentially emotionally-supercharged things. This article is no exception. I was not going to respond, until I realized I might be able to represent more than myself; On behalf of the single parent Aspies who are alone in breadwinning for the kids, I need my job. And on behalf of the Aspies who work with an enormous burden on our back all day, in social jobs, using our time-worn coping mechanisms as best we can, I need my boss to not ask the impossible of me. I have been challenged to full operating capacity, and I have not run from the challenge, but to be told to my face that I do not have AS or ASD, and need to get back in that angry customer's face and Deal With Them, is more than I can do. I don't want to stay home and not work. I just want my boss to get a clue. The entire world getting a clue would be better, but for right now, I will settle for the Diagnosis entering my boss's skull when all of my best attempts to speak my own truth have failed.