Tuesday, February 7, 2012

Un-Diagnosing Asperger's




There has been a loud and increasing outcry about the proposed redefinition of autism for DSM V.  In that redefinition, autism, Asperger’s, and PDD NOS will be combined to form one diagnostic label of ASD – autism spectrum disorder.

In my earlier essays on this topic, I suggested that people’s alarm was perhaps unjustified because I could not imagine health care professionals taking away a diagnosis that was allowing a person to receive useful treatment or therapy.

Yet that very worry seems to be the propagating rapidly throughout cyberspace . . . Indeed, that is exactly what may happen, if what these doctors believe comes to pass:

One psychiatrist (Volkmar) suggested up to 75% of the Asperger population would not qualify for the ASD diagnosis.

Another doctor (Siegel) said she un-diagnoses 90% of the Asperger kids who come to her today.

Conspicuously missing from both those statements is the second part . . . if the psychiatric community proposes to un-diagnose this large population of PDD NOS and Asperger’s, what do they propose to diagnose them with instead?  Something (I’m waiting . . .) or nothing?

If the expectation is that these “former Asperger people” will be diagnosed with something else that will qualify them for a sufficient level of effective services, it’s high time we hear what that new diagnosis might be.  I have yet to hear of any “replacement Asperger’s” for this population.

There is talk of Social Communication Disorder, but I am not aware of any broad array of services that might be associated with that diagnosis, if indeed it is an expected substitute.

Most people are diagnosed with Asperger’s or PDD NOS as kids.  Once the diagnosis is given, those kids receive social skills therapy and other help in fitting in.   Everything I hear from the field tells me the therapies are life changing for the people involved.  When I hear complaints, they usually are that the level of service is insufficient.  Conversely, I have never once heard of excessive treatment for Asperger’s.  Are we now proposing to take those services away from today’s Asperger population and others like them in the future?  What would be the justification for that?

I can imagine no reason except short term cost savings, which benefits health insurers and school districts.   While administrators of those organizations lobby from a different perspective, there is a widespread belief that these groups are already failing to deliver what's needed, in terms of support services.  Is the DSM definition being perverted into a tool to save these people money when they are not doing their jobs adequately and effectively now? 

I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets.  If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed.  If so, where is the outcry over waste?  There isn't any, because it's universally accepted among recipients that the services ARE needed.

The concept that a large population, who has a disability diagnosis today, might lose that diagnosis and access to the resultant services as a result of DSM changes is both shocking and unprecedented.

When I originally heard about this proposal, my understanding was that the new diagnostic umbrella would cover all those with prior ASD diagnoses. Believing that to be true, I supported the redefinition for the various reasons I've already articulated.  Now, I wonder if it's time to rethink that endorsement.

It seems like the medical and therapeutic community is sharply divided on this issue.  Many still take the stand that I expected, which is that a kid with an ASD diagnosis today, who benefits from services as a result, should be a kid with an ASD diagnosis in DSM V land.  For those who believe we would be right to un-diagnose some large percentage of the ASD population, what would you say to the people you propose to un-diagnose?

51 comments:

amom said...

I believe they are trying to replace it with Social Communication Disorder. Thiswill be new item in the DSM. However there is nothing stating benefit coverage will be the same.

What upsets me is just because you have a less severe form of some thing doe snot mean you do not have it. It does not mean it shoul dnot be treated. If a person has high blood pressure it does not matter how high it is-- you still treat it as blood pressure.

My son was very behavioral. His therapies help him greatly-- so now doe she no longer need them? What do they think should happen instead?

Greg Gust said...

I admit to not following the issue closely, but I had been led to believe that in practice, most of the Asperger's/PDD-NOS people would simply be folded into the new definition by default. The intention of the new diagnosis criteria was to recognize that there is no clinically meaningful distinction between the diagnoses - not simply to declare a bunch of people "normal".

popepooh said...

It is my fear that they would indeed just un-diagnose Asperger's and my son would then just be "different" with no supports. This is utter foolishness. It's like telling someone with one leg amputated that they no longer need a cane, that it's perfectly fine for a large amount of the population to go around hopping.

The Asperger's diagnosis saved my son, I truly believe, because without it documented for his school records his school life would have been even more of a torture than it already was.

Valerie Foley said...

As a 'community', we are lucky to have you.
Maybe we can all share these questions enough, until they get n front of the DSM 5 task force and they feel compelled to listen.

The nefarious intent (budget cutting, reduce the 'heat by reducing the numbers) behind the changes seems so short-sighted it's laughable (to me).

If this is the Task Force's intent, we truly are in big trouble. All of us.

Maria said...

I can't see how 'undiagnosing' these kids benefits the schools. They will end up with more issues down the road as these kids further diverge from the typical population. Thus needing more expensive outplacement or behavioral supports. Services typically start at ages 3-5 in the school systems and delaying them to age 8-10 when behavior becomes unmanageable will just be penny wise and pound foolish.

Unknown said...

Unfortunately, what I have seen in the K-12 educational system (and from poorly informed -misinformed- parents) is they believe that the vast majority of Aspergians are self-diagnosed and "don't really have a condition".

So by this logic, a large section of the population believe that Aspies do not need the services of psychiatrists or other professionals.

So I fear that changing the diagnosis system to something that may EXCLUDE too large of a population in NEED of services (and the need for valid DSM V status/diagnosis so that insurance companies will help cover the cost of said services) is a very disheartening thing; to be seen, perhaps, as a step backward.

Changing the general public's view on Aspergers is a MUST, and I would hope that a change in the DSM V status would help this view, not bolster more prejudice.

wsh1266 said...

Dr. Russ barkley is talking about something that tracks with ADHD called slugglish cognitive tempo, and I think that can fit some of the PDD NOS crowd, but we need more studies to truly get a grip on whats going on before decisions are made.

Michelle Salinas said...

I do believe that a lot of children are put on the Autism spectrum that shouldn't be BUT those that truly are need to be diagnosed correctly. My son has Asperger's and it took a couple of years to get the right diagnosis. Now that we know what it is, we can work towards helping him. What therapies do you feel help the most?

Laura said...

I have an appointment with our Psychologist next month so I will leave a post and let you know if my sons will be un-diagnosed. I have one son with Aspergers and one son with PDD-NOS. My Asperger child has an IEP and my PDD-NOS son has a 504 plan in school...

Dennis Sanders said...

I'm becoming more concerned that those professionals who undiagnose Aspergers will replace it with nothing. I don't know if I would go as far as the Autcast in labeling these folks, "bigots" or saying this is all the work of school districts, but I worry that this will affect those young ones that are having problems in school and might end up not helped because they don't fit the mold of autism.

SarahAnn said...

To me it seems like a grave injustice, its hard enough for Asperger individuals to get many of the benefits and services they need, this could potentially be a huge step in the wrong direction
I have long noticed a not so subtle discourse in the Autism comunity a vibe that people with Aspergers aren't really a part of the comunity which is rather dishartenting. I think because people with Aspergers tend to "function" well on the surface people neglect the dramatic complications they have trying to navagate a world typically not made for them. Just ask the members of mine and my best friends support group for adults with Aspergers run by Aspies( our group is one of if not the only one like it in the US, or so we are told). But again ask them

renajoy said...

At age 9 1/2, after four years of piecemeal diagnosis (add and spd) my son was finally diagnosed with aspergers, a diagnosis that explains so many pieces of the puzzle. I am so relieved and actually happy that we can get on with the business of helping him develop the social tools he needs to succeed. We/he have been so held back by not having this diagnosis. The thought of this being taken away from him and the many other people who need these services seems criminal. The bottom line as it often is, seems to be about money...maybe the real issue should be reevaluating the one size fits all education system.

SarahAnn said...

To me it seems like a grave injustice, its hard enough for Asperger individuals to get many of the benefits and services they need, this could potentially be a huge step in the wrong direction
I have long noticed a not so subtle discourse in the Autism comunity a vibe that people with Aspergers aren't really a part of the comunity which is rather dishartenting. I think because people with Aspergers tend to "function" well on the surface people neglect the dramatic complications they have trying to navagate a world typically not made for them. Just ask the members of mine and my best friends support group for adults with Aspergers run by Aspies( our group is one of if not the only one like it in the US, or so we are told). But again ask them

Unknown said...

I think this is a tempest in a teapot. My son's neurologist gave him an ASD diagnosis 7 years ago. He said it was a stronger diagnosis than Asperger's and that schools were MORE likely to meet our son's needs with the ASD diagnosis. He explained that Asperger's is a very narrow and specific diagnosis, and when school systems hear it, they say, "Oh, that's high-functioning autism, and high function means no services are necessary." Autism Spectrum Disorder recognizes the myriad symptoms/traits that children can demonstrate on the spectrum. When we went back to the Special Ed committee with our diagnosis (which we had to pay for out of pocket), they THEN had the school psychologist run tests. The school psychologist came back with an Asperger's diagnosis. I insisted that they use the ASD diagnosis instead of Asperger's based on our doctor's recommendations. My son is getting the services he needs from the school system. I'm not sure that the words make too much difference.

Nick said...

John,
Excellent piece. I haven't heard a peep about Social Communication Disorder. I think it's temping for many neuro-typical folks to just think that Aspergians are just nerds, and "the nerds you will always have with you". I know that the supports w/in schools ARE expensive, but it is no longer an option for kids to drop out of high school. There have to be options to get Aspergian kids, and adults who need them, the services so that they can thrive in this over-specialized & credential-oriented world of ours.

dc said...

So glad that you are supporting the Asperger population on this issue. I see a whole lot of legal implications in un-diagnosing ,or as I call, it a RECALL on a diagnosis. Will Dr.s be held libel for giving a 'WRONG' diagnosis, will insurance companies demand that we pay back services rendered, will schools take away all services and watch as our children fall between the cracks as we adults had to do when we were young??? Will we be paying out of pocket for a RE diagnosis? I believe nothing short of a class action lawsuit will ever settle such a mess. Let the petitions begin. This is beyond the pale.

Rosalind said...

First of all, I find it hard to get too excited over something that hasn't happened yet. Secondly, as a late diagnosee (@39) I vacillate back and forth over how much early detection would have helped, and whether or not it may have actually hurt me in some ways (BLASPHEMY!). The truth is – there is some truth to some of the criticisms. There are no hard & fast answers here.

When you get down to the nitty-gritty, every child has problems – it's be great if we could give every child the special attention that special needs children get with a diagnosis. What we're talking about here is money. The APA recognizes that the lifeboats only hold so many, and are using triage to winnow out those who can best stand on their own. AS kids have stood on their own for years (as we have made a big to-do with our famed alumni). However it's lonely standing on your own.

This is why I keep coming back to the reason why I got diagnosed, and that is depression. Depression rates among AS patients is phenomenally high. I was a depressed child, then a depressed teen, I finally eked out of it for a while as a youth, but then it sucked me back in. I now see how my life with AS has made almost everything so much more difficult.

Personally, I think it's a mistake to do away with the Asperger diagnosis – and I don't say that just because I now blog on AS (http://aspergal.blogspot.com/) but because I really see a difference between what is classically called Kanners Autism – High Functioning, and Aspergers. From what I can see, Aspergarians are more social - we're the ones trying to reach out but . . . just not quite getting it when around atypicals. Ughhhh, this is just so depressing!

Sandy said...

I see schools just trying not to serve. My professional specialty is hearing impairment. I just sat in a meeting where a Vice Principal told me that a girl with a progressive hearing loss that is now moderately severe was fine with two B-'s, a C and a D, and she didn't need any service. I'm betting if it were her kid, she'd be singing a different tune.
What I've observed for about the last 10 years is No Child Left Behind pretending that all kids need is a little intervention and they'll be fine, they don't need special ed services. The poor regular ed teachers are expected to custom-teach an infinite number of students with no support. To me, it's shocking.
Then there's withdrawal of vocational training. All kids will now go to college -- never mind if they don't want to. I don't know who is going to come when the plumbing breaks and my car needs work. Oh, John, of course! Yes, I should have known...
But seriously, it's very disturbing.

astrosmitty said...

When you look at what seems to be the trigger for redefining the lower-end spectrum, you keep on running across the phrase "stem the epidemic". It seems quite a lapse in logic to approach this on the semantic level without rigorously examining the precise diagnostic criteria that would give the change in terms some meaning. Has there been a breakthrough in identifying spectrum conditions that I'm unaware of? Currently fMRI shows some promise in this regard, but I don't think they are considering its potential application due to expense, so we're left with "soft" testing and peer assessments. Are these changing, and if so, how? All of this is currently unanswered.


When you have multiple generations showing up as new diagnoses, it may seem like an "epidemic", but really it is just the backlog of previously undiagnosed cases appearing in an artificially compressed time period. Over time, this would naturally level off, and yearly diagnostic totals decline. It seems that in an economic downturn, you cut services any way you can, but this seems transparently egregious in method. The stated aim is to "stem the epidemic", and no amount of verbiage  they dedicate in backpedaling changes the fact that the method is a bureaucratic fix, not a medical one. 

Catsidhe said...

@Astrosmitty: I think that's a large part of the "epidemic".

I was diagnosed in 2009 at the age of 37. Do I appear in the statistics at 2009, or 1973?

Squirrelgirl said...

My concern for my son is that he has benefited so much from all the therapies and interventions that he might no longer qualify under the DSM V. He is 13 and after years of IEP interventions he is the most highly functioning of the kids in his group. Be have been bless with a supportive school system and amazing staff. If we lose the diagnosis and the interventions where will that leave him?

Michael Forbes Wilcox said...

John, excellent!

I'm glad that you have expressed alarm. Rightly so. The APA is rapidly making itself irrelevant, I believe. We have a long way to go before autism is truly seen as a neurological difference rather than a "mental disorder" (ugh!) but this flap will help.

You are absolutely correct that "services" is the key. Autistic people need and deserve help in education, employment, housing, and other areas of life. In return, their success will increase the diversity, health, and prosperity of the community as a whole. It is not just the right thing to do, it is the smart thing to do.

I'm not fussed so much about labels, although I have found Asperger's to be an extremely helpful one for me. The important thing is that people get the assistance they require.

And, just so you know, in one of the more significant announcements the DSM Committee has made, they changed the name from DSM-V to DSM-5!

Lucy Berrington said...

An article by Francesa Happe of the DSM-5 Work Group (Jnl of Am Academy of Child & Adolescent Psychiatry, June 2011)said the people who don't make the new autism criteria might be diagnosed with social communication disorder (a new dx) -- as a couple of your other commentators have said. Their thinking is that many people with PDD-NOS do not have repetitive/restrictive behavior so are not definitively autistic. (I find this rather hard to believe.) She also wrote that although the various autism subgroups were not clearly defined, "clinicians show good agreement about who falls within versus outside the autism spectrum" -- which seems to contradict the premise of the APA and the claims of various recent op-ed writers that many people are getting AS diagnoses who shouldn't.

Thomas Thomas said...

I wonder how much of this is due to the current financial situation. Are Insurance companies finding ways to cut costs (as if they were suffering)? Are schools who are on a tight budget looking for a way to cut services? My wife works for a large school district in Southern California and the schools are almost to the point of cutting down to teachers, Principal and one support staff. They are about to cut out Libraries, music & Counselors. If they can cut out a high percentage of help for Special Ed (Which is Federally mandated) by only having to serve the most severe disabled that will make a big difference in their budgets.

This will bring the schools back to the 60s where only the average student and the wealthy will fare well, and any child who is abnormal will be labelled a troublemaker.

ravi4u68@gmail.com said...

I really agree with your blog.I think this is a tempest in a teapot. My son's neurologist gave him an ASD diagnosis 7 years ago. He said it was a stronger diagnosis than Asperger's and that schools were MORE likely to meet our son's needs with the ASD diagnosis..Thanks!
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Loulu74 said...

I am a member of two Asperger support groups on Facebook and members are completely upset by the proposed cutbacks. When the recent NY Times article published, I, among other members posted the servile and the overall response was outcry and fear. My son has AS and is 3 and 1/2 and I will fight tooth and nail to have any services removed. I placed him in two private preschools taughted for their excellence prior to his diagnosis, and it was clear that he is not able to thrive in a typical classroom environment without much one on one assistance. I have two sister in laws who are teachers, and they already complain about the increasing number of kids per classroom and feeling more like baby sitters than teachers. I could not imagine adding more demands on these teachers by placing kids in their classroom which require much one on one contact. The end result would be disruptive to the teacher and disastrous on the child, as he or she will be labeled as a trouble maker or not be able to learn what is required from them. The system of special services and/or aides works for the kids and teachers. Why disrupt a system that has proven successful? I envision continuing outrage and resistance to the proposed cutbacks.

Gavin Bollard said...

Good points John.

My initial support of the changes was based upon the same fallacy.

So, they take away the word "Aspergers" and diagnose the "worst afflicted" of us with Autism.

Then they invent a new word to describe the rest of us while withdrawing support.

Surely it would be simpler to leave the word and definition "as is" and simply reclassify the "worst afflicted" with with something which better reflects their needs?

Bureaucracy at its finest.

usethebrainsgodgiveyou said...

Severe Communication Disorder, Semantic Pragmatic disorder, , PDD-nos, ADHD. These are all labels my son has gotten from the medical community. The school "diagnosed" him as Educationally Autistic, and Aspergers. (They are paid more for Autism Diagnosis. So that is what their psychiatrists diagnosed him as.)

I "diagnose" him as Dyslexic, a visual thinker. Atypically, it's math and writing, or Dyscalculia and Dysgraphia that are his specific problems. I think part of the 20% of kids who are dyslexic and learn differently are given all kinds of labels. Look to Bipolar and ADHD to increase as Aspergians lose their label. Dyslexics get all kinds of labels from schools who are too rigid to teach them. In regards to dyslexia, schools get a D-.

M said...

people losing services that they need would be a disaster, i hope this isn't the result.

but i perrsonally wouldn't mind at all if i lost my diagnosis. i've felt nothing but bitterness since getting diagnosed with AS at the age of 30, it's been a real struggle to come to terms with it. and if the psychiatric community is going to play loose with the words and defintions for awhile, i'm content to just walk away from the whole mess. i'll still struggle socially and have the same difficulties i've always had, but i was deeply unhappy when i got the diagnosis and i welcome a change like the one being discussed.

most adults getting diagnosed seemed relieved, happy (which is strange to me), so i understand that i'm in a small minority on this issue.

John Elder Robison said...

From Jess Wilson:


John,

Thank you for addressing this again. There really are some frightening implications to these proposed changes.

One thing I'd like to comment on - You posed and answered the question -

"If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed. "

I fear that characterization is misleading. While we don't find an outcry among the recipients of services, we DO face widespread public opposition to providing those services to them.

In my experience, the outcry over 'waste' (typically so-called by those with little to no understanding of ASD) is in school board meetings from town to town across the country. I hear the arguments CONSTANTLY about the 'disproportionate cost' of Special Education 'dragging down' our public school standards and 'taking resources' from typically developing peers.

It's dangerous rhetoric at best, catastrophic at worst, but unfortunately, it's very real, pervasive. and one more very salient reason that the DSM-V proposal is so feared by many in the community.

It's also why, in my view, we still have so much more work to do toward educating the public about autism and the longer term implications of doing nothing for those who desperately need (and benefit so greatly) from support.

Thank you again for adding your powerful voice to the conversation.

Jess

Madmother said...

Another thoroughly disillusioned with it all.

What about the kids who identifiy themselves as Aspie? My son is comfortable and proud of having Asperger Syndrome, it is something he assocciates with the very core of who he is. And what *poof*, it is gone?

We have worked so hard in getting him this far, I fear for his confidence and belief in himself.

And worry about the high numbers of kids who will once more be in limbo land.

Cheryl said...

Teachers should be going crazy over this!

My son would not qualify under DSM V and therefore the school could deny him services. Without an IEP that specifies accommodations, the teacher would bang her head against a wall. She wants to do right by my son. Without an IEP, she would have to force him to do things he won't do, and he'd suffer with lower grades and therefore lower self esteem--which could lead to depression. Do we really want that?

Charlie Funk said...

A grandchild diagnosed with Asperger's and the ensuing journey and quest for knowledge on the subject persuade me that I was/am Aspergian. Early diagnosis for our grandchild was beyond critical. Would that medical science had known 70 years ago what it knows today and that I might have benefitted from it. Depression, bullying, being "that kid" and more make for an unhappy childhood that one who has not experienced cannot begin to imagine. If but a single child is "un-diagnosed" and denied access to the support that can mediate the issue, I call down a pox on the ones who have caused this tragedy.

Cheryl said...

"It is easier to build strong children than to repair broken men." Frederick Douglass

alohadave said...

The unknown...

In 1958 at the age of six I was diagnosed as being Autistic, and now I have a diagnosis of Asperger's Syndrome. I'll be 60 in a couple of days. There were no services when I was 6 that I'm aware of. Instead my single mother worked overtime and on weekends to afford "Speech Therapy" which was recommended. That therapy ended up being singing lessons, drama lessons, and tap dancing lessons at a theatrical school in Los Angeles. It sort of worked and I've read several articles over the last several months that suggested some of these "tools" for children diagnosed with Asperger's today. What worked was an improvement in my ability to "speak", understand "normal" social interactions via the drama lessons, and an improvement in my "clumsiness" with the tap dancing lessons. What was missing was an awareness that I was "different" from the other kids and by my teachers. Instead I was viewed as a troublemaker, a freak, the last kid to be picked for a team sport, and the prime target for being bullied. If our children today aren't protected by a diagnosis that provides help, understanding by teachers, and some insulation from bullying, then we're taking an enormous step backwards. It seems to me that those in charge of "labels" could care less about the innocent children that they may impact and more about politics and "money". It's always about the money, isn't it...

Sue said...

Hello John. I am married to man who probably has Asperger's, but we can not get a proper diagnosis through our health care provider as they do not accept the diagnosis. There is some testing available through private or university services but they are more costly than we have funds for yet. Until then, we are going through the only route available to us, testing of a neuro-pyschologist and then talk therapy. We have a great therapist and my husband feels good about speaking with him but I am going to request speech therapy for listening, multitasking and fine oral motor skill challenges. And that is only one area he needs help. For the most part, I have been his lone therapist. I have studied in depth, nutrition, psychology, anatomy and psychology, yoga and body work. I retired from doing my body work and only work with him now, reading studies on neurology, cognition and sensory integration. I have grown in skills to help him but wish we could have more proffesional help. I don’t have time, energy and money to develop a professional career for myself abound this all. I do wish there was comprehensive care for him and free college for me...but there is not, so we do what we can. I hope to tell the story of our struggles and triumphs at some point also, as you have. We have been following your work, and have gotten so much insight and inspiration from it. Thanks our for your tireless work in the issues.

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ggluvbug said...

For my son, he will still be able to get some services through his dual bipolar diagnosis. However, until he received his Asperger's diagnosis, he was not receiving the right kind of therapy at all. For years, he was being treated with behavior mod because he was diagnosed ODD instead. I knew it wasn't right and we were beating our heads against the wall. I just can't imagine where we would be without the proper diagnosis to get the right kind of help. :(

JJ said...
This comment has been removed by the author.
JJ said...

Wow, so if, as should happen, reality equates to the changed diagnosis does that mean I wouldn't have Aspergers any more? I'd be an NT? If only, wouldn't it be wonderful! Or maybe not.

Briansvista said...

People can be gifted in certain areas. Gifted is an award for high acheivements. A sort of qualification. It does take a certain part of the brain to be gifted. Most of all it takes focus and zero distraction. Confidence in your memory of facts, peicing together facts, train of thought. Autism is studied because these people are focused. They are less interested in the emotions and more determined to work on a set goal in a specified area. There emotions actually would distract them from there train of thought. To keep track of them would also. Therefore, the gifted are gifted. They want to study them and make them "normal". I would say this is only important if they are violent. A lot of people might want to study them because they don't understand this. I say just try to explain there is a time for work and a time for play. Play not necesarily like kickball before batman. But experiencing emotions and enjoying life with family and friends. The problem is they may not be as gifted trying to get back on track of what work was being done.

kevix said...

the way most describe the issue is that it would affect services for kids and teenager, but they are forgetting about the unemployed or underemployed adults that could need various supports and work-place accommodations that would require a certain dx.

Justthisguy said...

As I wrote on someone else's blog, now I am no longer an Aspy; I am either Normal or Autistic. I don't do "Normal" very well, so I reckon I am just Autistic.

The shrinks are kind enough to admit that "Autistic" comes in degrees, at least.

I correspond with some Milbloggers. An amazing number of them admit to having offspring, or other relatives, who are officially dx'd as Aspies.

One has an Aspergian nephew who is an EOD tech in the Navy, and yes they knew he was an Aspy when they picked him up. Laserlike autistic focus and fanatical attention to details are important when dealing with Other Peoples' Explosive Gizmos.

Keeping a cool head is good, too. I mind yer story about the magnesium and gasoline fire.

Justthisguy said...

John, you seem like a sensible person. I think you have enough money and resources to live large in Alabama, which is the free-est state to live in if you have money. (Sucks to be poor there.)

Why do you continue to hang out in Assachusetts? As the saying goes,

Massachusetts: Live Free, or Here.

Really, an awful lot of us in the rest of the country are thinking, not secession thoughts, but expulsion thoughts. Can we expel a State, such as Massachusetts, or New York, or California?

sabreena said...

I am amazed to see such an amazing post. Keep up the good work.

Colin_in_Mexico said...

The ironic part of this is they try to mask this as a "professional" way to get the right diagnosis, while it is just to save costs on a practical level.

"clinicians show good agreement about who falls within versus outside the autism spectrum" This reads to me just like the same old story. You're either autistic or you are not. Which is why, I assume, there still are people who refuse to recognize Asperger's as something real. As if a diagnosis made your life "easier" and "normal" people somehow missed out on something.

I can remember two situations vividly where this came up. Both times, I was "told" that "not being normal" does not mean that there is something "wrong" with you. Which totally misses the point. It is not about whether you are normal or not. It's this black-and-white thinking that annoys me the most.

Usually, people are happy to label you, but not when it comes to money. It's perverse. So if not being labelled as anything (besides all the nasty names that people call you) can save money, that's fine. If, though, you can gain money through keeping some labels alive, that is perfectly ok.

It may seem a bit far-fetched, but I think this is mainly about power relations. The decision-makers can decide over people's heads to their own benefit and then they maybe see what happens. The sad truth is that when people become undiagnosed through this new definition, those who have decided over this issue will not see the damage that they have done. They're well off.

Who cares, as long as you can save money.

Colin_in_Mexico said...

"As I wrote on someone else's blog, now I am no longer an Aspy; I am either Normal or Autistic. I don't do "Normal" very well, so I reckon I am just Autistic."

This is the absurdest thing I have ever heard. If you're left in a state like this, this is not very satisfying. It's like them telling you "Deal with it yourself".

How can you be either normal or autistic? No, what I actually mean is how can they leave the choice up to you?

That's the main problem here, isn't it? That people believe there is such a thing as "normal". It's just how people have come to perceive the world. The sane and the mad. The healthy and the ill.

Both have to keep to themselves. Because if they mix too much, many things would stop making sense.

The purpose of those services is to integrate people with Asperger's into the world. It's a way to bridge the differences. It may be a bit too idealistic to think about it in those terms, but that's what it really is about.

So it's ok to undiagnose... 90 per cent and leave them in their misery?

But then again, this world is not very fair.

Sue said...

We will just have to heal it ourselves. Have heart, listen to your deepest intuitions. Take care of you self, deeply.

Sam Craft said...

Thank you for saying so well what needs to be said. I have all the same questions. I am a female with Aspergers and one of my sons has Aspergers. AS can have many comorbid conditions (as you know) such as: depression, OCD, anxiety, sensory issues, phobias, etc.

AS is so far beyond a Social Communication Disorder. And who gets to decide the way I communicate is a disorder? It makes no sense to me.

I'm working to spread the word about females with Aspergers. I have a blog at Everyday Aspergers, and it amazes me how many females log in daily, to my blog, searching for answers and help. This is an interesting journey, to say the least.

My husband and I enjoyed your book. And that's a high compliment coming from my sci-fi-genre husband.

I have a Masters in Education and will use my skills and personal experience to help others as much as I can with this cause. Much support and love to you in your journey ~

immanuel price said...

Im 17 and last year my mother took me to a psychiatrist to "find out what's wrong with me" I was told that normally, in my situation, I would be diagnosed with asbergers. However, the doctor told me that because of the new DSM, i would diagnosed with social communication disorder. My entire life, my parents were aware of an issue with me but never did anything except yell at me when i didn't want to go into a crowded area, get angry if i didn't smile and wave to random people i don't know, or mock me because i don't have any friends like my brothers do. They even said i was a burden to the family, and my mother always told me she should hand me over to an asylum. The rediagnosis, didn't help me at all. The psychiatrist treated me like i was an object and not a person, and before i left, he told my mother this, "Now because of his condition, he won't be able to have intimate relationships like having a girl friend or getting married. He could possibly make some friends, but he won't be able to maintain the friendship. He won't be unable to get a job or go to college." Then he continues to whisper to my mother like i couldn't hear what he's been saying, "The best you could do is have him start therapy, and if that doesn't work, then a mental hospital is always a good option."

So yeah, i am clueless on what to do now. I've been taking therapy for 2 weeks now, and it turns out that my therapist doesn't even know what social communication disorder is, so why i am there is beyond me.

John Elder Robison said...

Immanuel, it sounds like you need some support - people who see Asperger's as something other that a reason to shunt you aside. You might look for local Asperger associations or even look at the local autism society to see if they have teen or young adult support groups.