Tuesday, January 31, 2012

DSM-V Revisions for Autism Spectrum Disorders & Asperger's Need to Remember that we are the 1 in 1


Article here, news flash there, passionate debate raging everywhere!  If you have a connection to the autism / Asperger’s community, you have probably come across writings and stories in the past couple weeks related to the proposed 2013 changes to the DSM-V manual.

What is the DSM-V?  It is the 5th Diagnostic and Statistical Manual of Mental Disorders due to be published in May 2013. (On a side note, anyone know why it isn’t called the DSMMD-V? This isn’t a trick question. It just bugs me.) This big book of standards published by the American Psychiatric Association will be the go-to guide in diagnostic criteria for mental health professionals in the USA. It will also be referred to around the world.

The last time one of these manuals was published was 1994.  For those playing at home, that is eighteen years ago. Seems kind of bizarre to me that it has taken so long for a revision but then again, this isn’t the software / hardware industry we’re talking about... (How many times have I upgraded Windows?)

It was in the DSM-IV that Asperger’s Syndrome first appeared.  I personally was not familiar with AS as a diagnosis until 2008 shortly after my youngest son was diagnosed with autism at age 2 and my oldest son was diagnosed with Asperger’s at age 9.  Women and girls often present quite differently than men and boys so I didn’t put all the connections together immediately but it wasn’t too long afterwards that I realized and accepted my own place on the autism spectrum. Once I did, it really was so obvious and explained so much about many of my childhood and early adult challenges. Of course it would take quite some time after that to go through all the medical hoops and loops to get my own official Asperger’s Syndrome diagnosis. I’ll save THAT entertaining back-story for another day.

Relieved that I finally had a name and some details for what I was going through, I wrote a couple popular blogs in early 2010: Before I Knew I Was An Aspie, My Puzzle Piece Didn’t Fit and The Outing of A Girl With Asperger’s Syndrome - What Did I Do?

Although my diagnosis on the autism spectrum did not define me as a person nor did it define my sons, it was a relief to finally be able to embrace the knowledge that I was not alone, that there was a reason for many of the sensory, social and physical challenges I had been having since childhood and that there was a whole community of others out there that were experiencing similar challenges as adults, teens, children, men and women.  Better yet, there were people I could connect with online who shared strategies, challenges and showed support. They were from all ethnicities, all socio-economic backgrounds, all religions. Although autism spectrum disorder is more prevalent in males in diagnosis, there are many women out there as adults that are undiagnosed.  In fact, a lot of adults end up being diagnosed after they have children or grandchildren on the spectrum.  It wasn’t that it didn’t exist before 1994... it’s just that no-one had been successful until then in trying to define it and have it recognized in the DSM by the medical community.

So now that you know that Asperger's Syndrome was first officially recognized by the APA in their DSM-IV, here is the shocker. That Asperger’s Syndrome diagnosis is likely to go away if the DSM-V proposed changes are to take effect.  Autism spectrum sub-categories such as AS and Pervasive Developmental Disorders Not Otherwise Specified (PDD / NOS) are proposed to disappear and instead there will be one umbrella diagnosis of Autism Spectrum Disorder.  

HOWEVER, it isn’t as simple as that. In order to qualify for this diagnosis (which will presumably impact one’s ability for themselves or their children to qualify for educational, medical or other services), a narrowing of the criteria takes place. Not everyone "fits".

It has not been made clear whether those previously diagnosed will have to spend extra money and time to requalify or if they will be “grandfathered” into the new Autism Spectrum Disorder diagnosis however I am assuming that for certain services, a reclassification or rediagnosis will be requested or required by the schools and/or insurance companies.

Here is the proposed diagnostic criteria for the “new” Autism Spectrum Disorder. Please note that a lot of these criteria will be very subjective and as the disorder must have initially displayed during childhood, adults or older children going in for a diagnosis are going to have to think back and use their best judgment in filling out the accompanying questionnaires. 

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 every
day functioning.

source:  http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

Additionally a severity level is added:


Severity Level for ASD
Social Communication
Restricted interests & repetitive behaviors
Level 3
‘Requiring very substantial support’
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.  
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
‘Requiring substantial support’
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
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
‘Requiring support’
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.
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.


source: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

What that severity level translates into in terms of service and support for the future is not for me to say but I sure would like to know for my two sons, myself and everyone out there in the autism / Asperger’s community. I’m not alone. I’m not the only one confused and concerned. For every individual in the community, there is a voice deserving to be heard.

Although the changes in diagnostic criteria have been in discussion for awhile, a January 19th article in The New York Times and a January 20th article and video segment from ABC news brought these proposed changes directly into the spotlight and fueled a fire among many in and outside the autism community. Part of what ignited the recent concern were ominous sounding titles like “New Definition of Autism Will Exclude Many, Study Says” and “Changes to the Autism Spectrum could leave some without health coverage.” These are the kind of titles that trend on Twitter, get shared on Facebook and make it into the mainstream media. Quite frankly, they’re the kinds of titles that put a fire under the rear and piss people off.

Various autism organizations responded to the articles in the media. Some sounded like they were coming out in favor of waiting to see how the changes go and others vehemently opposed, encouraging daily calls and emails to the APA.

What do I think? Where does our non-profit, Autism Empowerment stand?

Good question... Can I be frank with you?  I think at this point the whole thing stinks and will further fracture a community of already divided individuals.  If what some studies are saying is true, that the new definitions of autism will exclude many then who exactly will that benefit?  How can disenfranchising a portion of the autism community be good for promoting autism acceptance and awareness?

Right now it all looks lose-lose to me and judging by some autism forums, there is dissent all around. There are some on the severe end of the spectrum that don’t want the Asperger’s population in with their group because of fear that there won’t be enough funding for their services. There are some in the Asperger’s group that don’t want a new “label” of autistic or autism spectrum disorder for fear of stigma.  Where is the acceptance for all of us for who we are, where we are on the spectrum at this point in our lives?  Where is the compassion? Where is the logic? Why can’t we be BOTH neurologically diverse and accepting that there are many of us on the autism spectrum that want an accurate diagnosis so that our children and ourselves as adults can have services available to them if needed?

Back in my early sales and marketing days, I was taught that when presenting a new product or service to an individual or group to make sure to answer WIFFM (pronounced wiffum) or What’s In It For Me early in the presentation.  It was applied psychology.  How can my service benefit YOU? Because quite frankly... it doesn’t matter how special you think you or your product is, if a customer doesn’t see a personal benefit, they’re not likely to buy what you’re selling.

So I ask all of the professionals on the DSM-V diagnostic committee, presuming you have the best interests in mind of all of those on the autism spectrum, what is in it for me with this new diagnostic criteria? And just out of curiousity, what is in it for you?

Will my son with autism who is 5 who has made great progress through early intervention and is now in a mainstream Kindergarten with pull-out supports for social, speech and OT still qualify for the same services he has now with the new diagnosis of autism spectrum disorder? Academically he’s quite bright. Socially, he’s quite young. Sensory-wise, he is all over the map.  Some would probably call him “high-functioning” but high-functioning does not mean not having a ton of problems on the back-end. By back-end, I also mean his back-end... but that’s another story...

Will my technologically gifted but socially naive son with Asperger’s who is 12 but is finding middle school challenging find his SCIP (Social Communication Integration Program) program and the aid he’s been receiving with organization and life skills at school to suddenly disappear?

Will I, a 44 year old woman with Asperger’s with a combination of sensory and social issues now fall into the abyss?  Will I have to pay another exorbitant amount of money to be reassessed? Is it worth it? I mean after all... who knows when the next revision might change things all again.

Truth be told, except for the school services, we’ve pretty much had to pay out of pocket for most of the other services we’ve received. Those health deductibles are pretty high for us self-employed types... which by the way, tends to fit many Aspies who are employed.

In my immediate family, we are just three on the spectrum affected by these new DSM-V changes.  You’ve probably read the CDC statistic that approximately 1 in 110 children in the USA have some sort of Autism Spectrum Disorder.  If we apply that statistic to the United States population as a whole, there are likely millions in the United States with an autism spectrum disorder. Yeah... that’s a lot.

Earlier in this blog, I asked, what do I personally think about the proposed changes? Where does our non-profit, Autism Empowerment stand?

Here is my answer...

Whatever the powers that be on the APA diagnostic committee decide regarding the final revisions to the definition and sub-categories of “Autism Spectrum Disorder” will not change the fact that...

1) When I wake up the day after their decision, my sons and I will still be traveling the road less traveled on the autism spectrum. 

2) We’ll still have challenges related to our neurological / medical conditions and those challenges will not disappear because of a diagnostic definition change. We'll still need strategies to assist and want people to support and understand us. Perhaps what will disappear is money from our wallets as we jump through hoops and loops again to get rediagnosed / reclassified. The APA isn't volunteering to pay for that, are they?

3) Although some would prefer looking at us in the autism community as statistics or an epidemic, we are individuals and deserve to be treated by the medical community, autism community and world community as such. Our medical services should be individualized. We should not be disenfranchised.

We are not 1 in 110, 1 in 70, 1 in 150 or 1 in whatever number some incredibly expensive research study decides is next.

4) We are the 1 in 1. Treat us based on THAT ratio. For you see, no matter what the “prevalence rate” is, in our lives for those of us who are on the spectrum, autism is 1:1. We live with it every day.

Autism poses lifelong challenges. Individuals with autism deserve the opportunity for lifelong support.

I’ll be honest, the new proposed definitions frighten me and sadden me. On the positive side, they reinforce in my mind that I made the right decision in getting involved co-founding Autism Empowerment last year. Autism Empowerment is a 501(c)(3) public charity that aims to provide nationwide and worldwide support to individuals and families affected by autism spectrum disorders and related co-conditions. We serve all ages, all stages of life.

The four foundational pillars of our organization are Accept, Enrich, Inspire, Empower.  We are dedicated to creating programs and services that provide help in the here and now... and when we need it most.  

Accept - We strongly promote the unconditional acceptance of those on the autism spectrum and with related disorders. This includes self-acceptance and social acceptance. By accepting each spectrum traveler for who they are, where they are in the present moment, we are promoting both autism acceptance and autism awareness.

Enrich - Our goal is to provide educational resources, programs and tools to improve and enhance life skills for those on the autism spectrum as well as their families, caregivers, therapists and teachers. We aspire to make life more meaningful and rewarding.  

Inspire - We dedicate ourselves to be a positive and uplifting organization that encourages. promotes and celebrates success in all individuals. We believe each person on the autism spectrum has the opportunity to make a positive difference in this world.

Empower - We strive to empower those on the autism spectrum to achieve their highest quality of life academically, emotionally, financially, socially and spiritually.

We are about bringing people together, respecting both our individual talents and the wide range of the autism spectrum and providing support, encouragement and enrichment.  We have a vision and although we’re in start-up stages, we will make our vision happen.  If you’re interested in joining us, we could use your support.

I didn't mean for that last part to sound like a "plug" but Autism Empowerment truly is my passion and calling and I hope for the organization's name to be known so that we may develop programs to help all those who desire it. 

Thank you for staying with me while I shared some of my thoughts about the recent proposed DSM-V changes. I've been wanting to write about this for over a week but it take me awhile to compose my thoughts and transfer them from my head to my fingers. I truly don’t want to take a "wait and see" what happens attitude as some propose. I’m not afraid for my opinion to be known whether it be seen as popular or unpopular.

I personally think being proactive and advocating with respect will have a better chance of positively affecting you and your loved ones than sitting back, waiting for something to happen and then being reactive.

Remember, the only statistic that will never change in this debate is that when a loved one is on the spectrum he/she is the 1 in 1. If you are on the spectrum, YOU are the ONE in ONE. You deserve to be treated with dignity and respect, with kindness and accepting, with support and encouragement.  Advocate for yourself.  Advocate for your children.  Advocate for those on the spectrum who have trouble sharing their voices. Do it positively. Do it passionately. Do it professionally.

If you’d like to contact the American Psychiatric Association (APA) to let them know your opinion on the proposed diagnostic changes, you can do so at dsm5@psych.org or apa@psych.org. You can also call at (703) 907-7300.  

Thank you for taking the time to read this! Please feel free to share with your social networks, the media, colleagues... and onward! Let your voices be heard! We all deserve the opportunity to be accepted as we are and to let our lights shine. We ARE the 1 in 1. 

Karen Krejcha, Mom to 2 on the spectrum, Aspie 
and Executive Director
Autism Empowerment
http://www.autismempowerment.org

10 comments:

  1. You know that is so true, the one in one thing. I hadn't thought of it that way but I'm tired of the schools and the insurance companies looking at my son as a funding statistic. He is my BOY and he has Aspergers and he is finally beginning to understand what that means so why take it away?

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  2. i liked your article, karen and hope that tv shows like ellen degneres or oprah winfrey or one of them will interview women like you who are a kind but forward thinking force in autism acceptance and advocacy. temple grandin is great but we need more voices out there, more flavors of the rainbow spectrum.

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  3. Thank-you for this. "Speaking On The Spectrum" shared the link to this article for all of us that were struggling to understand the DSM-V issue and what could be done about it (or what needed to be done).

    Thank-you so much for helping to explain the whole thing as well as give us (the average joe so to speak) a way to speak up and advocate. I appreciate it greatly and will be passing on your blog post here as well. :)

    On another note, my oldest (the only one currently diagnosed as the other one is still in the evaluation phase) is diagnosed mild to moderate Autism but is only a hair's width away from a severe one. (We managed to break through a little with Sign Language and it's what tilted the scale down to "moderate").

    Both of my sons show all (my oldest) or most (my youngest) of the criteria listed as needed above for a diagnosis so I'm pretty sure they would still get coverage because of that. However, I am still saddened and frusterated about the whole thing because even though it looks like my children will still get help, what about the others? Friends, family, On-line friends that will not meet enough but still need help? It sickens me and scares me to think they would be left out in the cold due to all this. :( I want to be one that helps keep that from happening, so that's why I'll be sharing this post and trying to do what I can too.

    1:1... I would like to add to that if I may (judging from your post here I think you will like it). Everyone who is facing a diagnosis of Autism is in a 1:1 situation, but our Autistic/Autism community NEEDS to step up and learn from a popular 3 Muskateers saying, "All for one, and one for all".

    I agree with you that I wish people on different ends of the spectrum would quit fighting with each other and start joining in a supportive alliance. Just think what we all could do if we would just stop fighting amongst ourselves long enough to stand united for the services, awareness, and support we all need?

    --David's mom

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  4. whoops. Sorry that was so long winded. lol I tend to forget to watch for that when I am typing. lol

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  5. http://crafterdream.blogspot.com/2012/02/thoughts-on-dsm-v-revisions.html <<--- the blog where I passed on yours :)

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  6. Thank you so much for all the thoughtful comments, Kelly, "call me concerned" and Crafter Dream / David's mom.

    Often when I write, I wonder if what is in my head (which seems at the time so visually clear) will make sense when put into writing. There is so much to say about this topic that is so near and dear to the hearts of so many in the autism community.

    Kelly, I agree. I feel for you and your son and hope that Asperger's will stay in the DSM V. Also, I agree, who wants to be thought of as a funding statistic? So much donated money (with great intentions) / government money gets funded into research and although I'm not saying research isn't needed, I'd rather see more money going into immediate services and programs that will help enrich and empower individuals and families in the present. Help us now where we're at.

    "Call Me Concerned", I would love the opportunity to appear on various talk shows. I think it's important to continue having positive voices in the community even if the topics are ones with negatives attached. If anyone reading this has any connections, please drop me a line!

    Crafter Dream, I didn't find you long-winded at all and I loved your "All for one, and one for all" comment! Great visual and so fitting! Thank you and thanks to "Speaking On The Spectrum" also for passing my blog posting along. I truly appreciate that.

    I agree that when those in the autism community work together for positive benefit, amazing things can happen! The in-fighting is so frustrating and I try to stay away from it... but mainstream topics like the DSM-V change which impact so many bring a lot of the fighting right back into the forefront again. I often worry that the real priorities will be diluted in favor of someone's agenda or someone's budget but with voices like ours being used for good and positively advocating, I do hope we'll make an impression that will mean something significant.

    Thank you again for your kind words!

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  7. My wife used to work in the budget office at NIH back in the day (in Bethesda, MD). Not a "medical professional", but close enough to the action. There is so much money that passes between the government and the drug companies(and when I say government, we can include both parties). There is a motivation for these changes that goes beyond a search for truth, is all I am going to say.

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  8. Hi Karen,

    After some initial "knee-jerk" reactions and after having been suitably corrected by a member of the community, I have been sitting back and waiting patiently for things to clear up before taking a stance.

    Let me be clear. The issue is no longer about "them and us". It's not about what name we will be called; asperger or autistic. It's simply about the usability of the diagnostic criteria.

    It seems to me that the new criteria would be very difficult to apply and would require quite a number of visits and observations. Far more than today's criteria.

    Then there's the mandatory point A3.
    "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"

    Correct me if I'm wrong but even taken subjectively, doesn't this more or less exclude all married/relationship aspies? After all, my wife isn't actually my "caregiver" and if I'm in a relationship, then I've clearly demonstrated the ability to develop and maintain a relationship to my developmental level.

    The more I learn about it, the more I see the changes as "wrong"... and you're right.. It doesn't matter how they classify us, it won't change who we are and what we need.

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  9. Hi Alexander,
    Thanks for your input. It would certainly be disappointing to find that there is a motive for these changes that is not in the best interest of the patients who wish to qualify for care. Unfortunately, given what I've read and experienced with myself and my sons, I'm not at all surprised.

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  10. Hi Gavin!

    I always value your input tremendously and thank you for your comments. I am also confused how to interpret, ""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"

    I would imagine it is supposed to be subjective but when I look at requirements such as these, I do take them literally and apply the most rigid standards. I know not everyone does or will but if these standards were to have the power for a doctor to disqualify someone for care because they were married and on the spectrum, that would certainly be quite dismal and not give much hope to those who strive to achieve loving relationships as most of us do in some degree!

    I agree with you also on the classification point. For me personally, call me a person with Asperger's syndrome, a person with autism or autistic, I'm okay but if the diagnostic criteria isn't going to be usable and appropriate, then what good is it.

    I am not the only parent that has gone into a doctor's office with apparently more knowledge on the topic than the professional I'm seeing. (I'm not talking specialists but general medicine.) At our youngest son's recent health check-up where he sat very quietly on the examining table, the doctor (fairly new to us) said something along the lines of it looked like our son was growing out of his autism. WHAT?!?!?! In 2 minutes of seeing my child on a table, a doctor says that and thinks he's being responsible? (Too bad I couldn't have brought videos of his fecal smearing incident and subsequent meltdown later that night.)

    I want the diagnostic criteria to be able to help empower people on the spectrum to qualify for services they need, not disenfranchise them...

    Not to mention all that this will cost. No... as much as I like to stay optimistic, I do not see the positives in what is currently proposed. Fortunately more organizations with louder membership bases are starting to speak out. Let's hope our voices are heard...

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