My Son Has Asperger's ... At Least Until 2013

My son Tyler is shows affection, understands and finds sarcasm amusing and has some underdeveloped speech qualities. He's not an "A" student, can't remember some social ques, but Tyler can memorize dates times and all details of events that he deems special in his life. Tyler's doctors have diagnosed him as having Aspergers Syndrome. Yet our local school district has taken longer to except his diagnosis due the neat little categorical, box the district prefers to place children in. Because Tyler is not the typical Aspie student academically the preference was to not accept his qualities that were typical for a child with Asperger Syndrome. Why don't most understand that being on the spectrum is just that. There is such a broad range and combination of symptoms how can you categorize based on academic progress when so much of it hinges on a level of social awareness that even most "main-streamers" don't get right away. Long story short, four IEP's later Tyler received the support that he needed under the Asperger Syndrome Program.
Don't get me wrong we still have a long way to go but putting these kids in a box with out looking at the whole child we will definitely loose out as a society.

I completely understand your point of view. And in regards to getting the correct type of assistance for so many children, and how helpful having different diagnosis’ are, I agree that this change will present problems.

However, as someone working in a field which uses the DSM's diagnostic criteria, I still understand this change. Why you might ask? Because as a provider, despite the strict criteria, it can still be a judgement call in many cases.

While many people with Asperger's are easy to clearly distinguish from those with other forms of Autism, many are not. It is a spectrum after all, and while ever we enforce lines (even if they are not completely arbitrary and do follow some natural distinction) some people will fall on the line, causing significant problems and difficulties beyond those which are common in the provision of care.

If we do away with the line, it becomes (more clearly) a matter of degree and style, rather than segregation (which while not the aim of the current diagnosis model, is a sad side effect in many cases).

Yes, it could be said that we lose detail. However, it could equally be said that we gain flexibility for patients that we struggle to help currently. And when dealing with such complex concepts, people and care; that is a good thing.

All this is not to say that I approve. There remains a (very) small section of the scientific community with interesting suggestions that the two are in fact completely different. I eagerly await the results of the ongoing research by these people. However we must do what we can with what knowledge we have. All psychology and health is moving towards spectrums, as it is a far more accurate representation of the world. Of course lines must exist, otherwise a working system of care, support and services would be impossible. But the fewer there are, the easier it is to help those who fall on the borderline.

It is for this reason that I would not oppose the change. However I still have significant concerns on precisely how this change will affect such things as the provision of support in education and other areas. Do not let people tell you your concerns are unwarranted; professionals agree that they are. But they also can see the benefits for patients which they currently struggle to help. Do not ask us to choose between our patients, we cannot. This is why so many are working very hard to prevent these changes from harming their patients in whatever way they can.

I completely understand how important the part about identity is. But as Asperger's is already a type of Autism, it is a part of a spectrum, really all that is happening is the official name is changing. But you can be sure that the term Asperger's has sufficiently entered the public consciousness that it will not disappear, and much of the general public will not know that a change has been made. The identity, the community, does not have to change.

And I’m sorry you feel the change is being made because it makes experts uncomfortable and that they find it inconvenient. I am sure you did not mean it hurtfully, so I am trying not to be hurt. Because we do care deeply about those who we work for and with. We know this can cause problems for some. But we also know it will help us to help more people.

Again, please do not see this as an attack, or even that I disagree with you. I just like people to be aware of the complexity and degree of grey in this area, and how even professionals in the area struggle with this.

Mir, your son is lucky to have such a great advocate for him. While I support you in your efforts to shed light on his abilities, I do not agree that the autism label is a negative stigma. My son is 17 and was diagnosed with autism at age 3 by one doctor and with PDD-NOS by two others. If you met him, you would experience a young man who is somewhat socially akward but very capable. He just started at a public high school this year and has his first job at Petco through the school's workability program. When he was very young, I felt the same way, that saying he had autism would stigmatize him. But now I don't care. He is who he is and he'll suceed or fail depending on his abilities. There is also a false impression that those with aspergers don't need services after high school because they are so capable. Not much research has been done in this area, but the results of these studies are similar. Young adults with aspergers or high-functioning autism are not transitioning into their communities after high school. Your son will always be the "bright and social person who suffers a variety of sensory sensitivities and a fair amount of anxiety relating to his inability to gauge and follow social cues". He sounds terrific and interesting and he'll go on to accomplish amazing things in life. He'll always be your son. His dianosis is secondary to who is really is, and this is true no matter how you label is disability. www.aweoutofautism.blogspot.com ( http://www.aweoutofautism.blogspot.com )

I agree with you about being attacked for having a different opinion. I've seen so much of this in the autism community. My last blog was specifically about this.

I'm in the UK, and here the term Asperger's is already used interchangably with High-Functioning ASD. The barrage of conflicting medical opinions does us no favours when we're trying to find an identity, I feel.

There has been talk here - I don't know if it's the same there - of seperating the two diagnoses out completely. In this case, a diagnosis of Asperger's would be distinct, and not a diagnosis of autism. I guess that's a complete reversal of where the DSM seems to be headed.

I just wish that, in all of it, they would listen to those of us who are actually affected by the labels they so arbitrarily fling around!

bubbleboo is a freelance writer and carer to her son, who has Asperger's

Your son, with his unique set of traits and quirks, is his own distinction. No one who meets him in person or in writing is going to confuse him with a child elsewhere on the spectrum; same goes for my son. Again, I'd focus on the traits, not the label. Those who under- or overestimate his needs are going to need specific redirection, not general.

More excellent comments stemming off Bev's post ( http://www.autismstreet.org/weblog/?p=371 ):

"...some people with Asperger’s are angry with the definition of autism being changed is because they feel that being attached with the label “autism” does bring stigma. This is unfortunate. The purpose of a differential diagnosis is differential medical treatment. If there is no difference in treatment, there is no need or utility for a differential diagnosis."

Thanks for being open to discussion on this difficult subject.

Shannon Des Roches Rosa
Squidalicious.com ( http://www.squidalicious.com ) parenting first, autism second
CanISitWithYou.org ( http://www.canisitwithyou.org ) real tales of schoolyard terror and triumph

Thanks for illustrating the point I think a few others were also trying to get to, but in a way that didn't devolve into invective and name-calling. I have a hard time listening when I'm being attacked. This, however, shows me the potential flaw in my reasoning in a very clear way.

Is there a way to preserve a distinction without falling into a less-than, more-than trap? (Because that was certainly never my intention, though Bev's words make me realize that -- intentional or not -- that can be the result.)

--
Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

is from Bev at AspergerSquare8's post, Angry Aspies Please Go Away ( http://aspergersquare8.blogspot.com/2010/02/angry-... ):

...Michael John Carley says ( http://www.npr.org/templates/story/story.php?story... ) he is "going to have a very hard time calling [him]self autistic," since some others with the same label may wear adult diapers and head-restraining devices. "Hard to swallow," Mr. Carley? What I find difficult to digest is the idea that there are people out there promoting pride and dignity for people diagnosed with Asperger syndrome, while denying other disabled people the same. It makes an easy target of those of us who happen to share (well temporarily, until the new DSM V is completed) your label, but who stand for the basic human rights and dignity of all people. And, oh yeah, it's just plain wrong.

I am autistic, Mr. Carley. I have always been autistic, and I have never been ashamed of having this in common with people whose needs are greater than my own. [emphasis mine SR] I worry, though, that people might think I'm like you. I'm not. I know that having a disability doesn't make anyone less of a person.
The emphasized sentence is a sentiment I wish was shared by everyone under my son's soon-to-be-larger autism umbrella.

Still, it is reasonable to be concerned about the assumptions people attach to a label, and any  wedges those labels may needlessly introduce to your child's school or social life (in which case then the issue is really peer or teacher education ( http://www.squidalicious.com/2008/11/helping-peers... )). But it's generally more useful to focus on individual traits or symptoms, unless the Autism or Asperger's label is required.

Thanks for sharing your story,

Shannon Des Roches Rosa
Squidalicious.com ( http://www.squidalicious.com ) parenting first, autism second
CanISitWithYou.org ( http://www.canisitwithyou.org ) real tales of schoolyard terror and triumph

I understand how upset you must feel over this, and I completely agree.  I have friends with Asperger's and I have friends with children with Autism.  The Aspies are very different from the Autistic children.

The reason the divisions exist aren't to separate the children, but to insure that they have better access to appropriate care.  That's why all of the divisions throughout the DSM exist.

I can't imagine what it would be like if the APA decided to merge all psychotic disorders, Bipolar Disorder, and anything that is considered similar because technically a Schizophrenic is on one end of the spectrum of that area and a Bipolar is on another, with the Schizoaffectives in the middle.  It would piss me off to no end.

Of course, I don't particularly like that on the APA DSM-5 development page, they say that they've proposed the changes for all of the diseases to prevent over-diagnosis.  I don't know how many Asperger's patients and Autism patients get over-diagnosed (I'm doubtful that there are many), but I know that Schizoaffectives are pretty much underdiagnosed, so I don't get our inclusion in the over-diagnosis issue.

here and say, there are advocates that don't charge money. My son is currently diagnosed with Asperger's and Schizo-Affective Disorder. I became an advocate for him and other families because I was sickened by how we were treated. 

As far as classifying a child on an IEP, that is for the state records and effects their federal funding. Legally it makes no difference how the child is classified. Services on an IEP are and should be needs driven and if a child shows a need for a specific service, then the school has to supply that.

Please do not let the administrators of your school tell you what your child can't have. You are part of the team, not someone to be dictated to. 

You are making huge assumptions about the autism spectrum - about what kids with autism are like, and what kids with Asperger syndrome are like. The fascinating thing about our kids with ASD is that they are all so amazingly different even when they share common characteristics. You speak about 'lumping' people together - this is what you are doing in this discussion. Under the diagnosis of autism, for example, there are vast differences between skills, verbal ability, intellectual ability, social functioning, that your discussion here demonstrates a real lack of knowledge. Have you spent any time with people with autism? You think I was taking offence before - partly I was, but not in a personal sense, really. It was just that by "lumping" anyone with autism under the Rainman umbrella, and anyone with Aspergers under the "Einstein" umbrella, you were showing a lack of understanding and not helping this discussion. I have a highly verbal, intelligent autistic daughter, I have both Asperger and autistic friends, and I work everyday with both teens, children and parents of both Aspie and autsie children - and I have yet to meet anyone who neatly fits either definition. I think what they all share is a diagnosis of an Autism Spectrum Disorder, and if this debate is anything to go by, removing the Asperger and PDD-NOS labels will be nothing but positive - the last thing this community needs is a misguided view that one autism is better than another. 

On the IEP sheet our district uses, there are a dozen or so boxes you can check off to qualify a child for services. Some of them are pretty clear: deafness, blindness, Down's Syndrome. But there are a small handfull that are less so: autism, emotionally disturbed, other health impaired, speech and language.

What they do to help your kid depends on which one of those boxes gets checked. N's current classification is speech and language, which supposedly makes him NOT special ed, but qualifies him only for speech therapy and one or two small add-ons to that. It doesn't protect him for being retained based on his disabilities (which is what is currently being threatened because of his test scores); it doesn't provide him with one-on-one academic support...or ANY academic support at all (despite those test scores). And it certainly doesn't allow for a one-on-one aide, which is what he needs most desperately.

Getting a PDD diagnosis (which can NOT be done through our school district, but needs to be done by an M.D.--the developmental pediatrician I originally contacted wanted $1700 CASH to assess him for it, but we luckily found a psychiatrist on our insurance instead) gets us a little closer to checking a different box, which is what we hope we'll do in our upcoming IEP meeting. But my guess is they're going to fight me on checking "autism," and it's going to take a long, hard fight (using a very pricey educational advocate) to get them to do so.

If PDD = autism, no fight needed. Well, no fight needed to get the box checked, at least. Which is, I know, only half...no, only a quarter...the battle.

The system is totally broken. I'm not sure this will come even close to fixing it. But in MY situation, it's a step in the less-discriminatory direction. But then again, PDD doesn't have the same sort of 'culture' around it that Asperger's does, so I might feel very differently were I viewing this all from a different place.

My 15 year old Grandson  has Aspergers.  He is no where near
(dysfunctional) what you think when  the term autistic is used.  He has aspergers and doesn't require the same amount of help as someone with autism needs.  I hope they do not take the aspergers term away.  They give be doing a grave disservice to our children with saspergers.

Thanks for the great article.

BrendaLea - The Purple Lady

I'm going to be the last person to claim the system isn't broken, I'm just saying it's not a money/class issue, necessarily.

Shannon's post broke my heart. There are so many communication breakdowns when it comes to IEPs, but Zakh's story is just... well, that's the nightmare. And the worst part is that it's completely preventable (in a world where people give a damn).

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Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

If the kid attends public school, the school has to conduct the testing (or find qualified evaluators who will) on their dime. I agree that parents have to be well-informed to push for this, which can (and probably does) become a class issue, but money isn't REQUIRED.

As a tangentially-related aside, there was a recent study released about the sharp increase in Asperger's diagnoses in the Silicon Valley, and the "upper middle class and their pet diagnoses" thing was floated, of course, but I believe the study concluded that it had more to do with genetics and 2-engineer families (and which clusters of attributes are more likely to result in Asperger's).

So while poorer families are less likely to get a definitive diagnosis of anything, I still think there's a real genetic component here that can't be explained away as being classism.

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Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

jumping through those hoops requires money and insurance...thus making it something that is diagnosed in children whose parents can afford it.

( http://twitter.com/thatwoman )
Retro-Food.com ( http://retro-food.com )

The schools don't... look at Shannon's post today about a child who was supposed to have all sorts of assistance but didn't...

http://www.blogher.com/autism-outrage-activism

I'm not sure I quite completely agree with TW but I see her point.

~Denise BlogHer Community Manager
Flamingo House Happenings ( http://www.flamingohouse.net/ )

As a teacher, I prefer the separation in terms because there is such a wide range of needs depending upon where the child falls on the spectrum.  Understanding the child's diagnosis allows classroom educators and resource educators to differentiate and better serve our students.  We're supposed to reach and teach all students so we need the best information about them we can get in order to effectively do our job.  Lumping people under one umbrella term does not sound like it will serve them best in school or society. 

See, THAT I totally agree with.

It is a matter of semantics.  And having one of each (one severe, one aspie/PDD/whatever the doctors call it this week) I can see both sides of the coin.  I already have to fight to get him some things, like speech therapy (but he talks fine!  He's perfectly intelligible) because they don't understand that HFA kids can have issues with semantics, pragmatics, inability to get humor or jokes, their black-and-whiteness, categorizing, etc.

I've gotten both.  "Not autistic enough" and "sorry, not autistic"

Should be interesting to see what it brings.

Domestic Engineer, Total Babe and SAHM

And I don't know if I'm being overly cynical, but here's my take: The folks who are certain that calling everyone "autistic" is going to get more services are forgetting that bureaucracy is incredibly adaptable. Just as there are schools currently denying services for Asperger's and PDD because it's "not autism" (even though, hello, it's already "on the autism spectrum" and yes, it's autism), after this change (if it happens) it will become "Sorry, not autistic enough!"

I hope I'm wrong, but it's merely semantics. All the "non-severe" autistics will still be denied services, business as usual, just with different labels.

--
Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

I also tend to fall into thinking that Asperger's is the diagnosis for middle class and upper class kids who don't quite fit into the box of today's society though.

Okay, that makes me want to curl up in the corner for a long time....

The diagnostic criteria for Asperger's are pretty rigorous (and a subset of the autism spectrum ones), many of which are objective, many of which are medical rather than behavioral, etc. While I know there are probably people and even medical professionals willing to toss the Aspie label at anything "different," I'm going to guess that the vast majority of those diagnosed have jumped through a lot of evaluation hoops to land there, you know?

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Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

I actually, in theory, mostly agree with you (though I also really believe that a spectrum like this makes it realllllly hard to draw a definitive line between one disorder and the other). But in reality, I'm going to cheer the change in the DSM. In fact, it can't come soon enough for me. Why?

My son has a diagnosis of PDD. In our school district that means a fight (lawyers, advocates, unpaid days off of work, and hundreds of dollars I don't have) to get services for him, because I keep being told, "But he's not autistic, and XYZ thing he needs is only for kids with autism."

With this change, that argument goes away.

Would I prefer someone change the ed code so that the criteria for helping a child is (gasp, heresy!) the fact that he NEEDS HELP? Sure. In that case, I'd be happy for the DSM to make distinctions. I also want good, affordable healthcare, and...well, you see how well that's going for me.

And thus, in the interim, I'll take whatever label it is that will help my son get what he needs, and allow him to have a shot at fulfilling his potential. At this point, that's the only thing I can afford to care about.

Feels yucky on one side-because we have all seen Rain Man and that 70s tv movie with the parents sitting in the bathroom with a child...and Asperger's feels like a "oh that isn't my child"  slide into safety. My son has PDD-NOS and an alphabet soup. I saw my ex sigh with relief when the doctor said that while she gave a similar dx she didn't pick autism because of...this and that. But really...I think with more blanks filled in and a more liberal view, if we must label children and people like cans, Autism is probably the right one.

I also tend to fall into thinking that Asperger's is the diagnosis for middle class and upper class kids who don't quite fit into the box of today's society though.
( http://twitter.com/thatwoman )
Retro-Food.com ( http://retro-food.com )

They have moved around, changed, rewritten, etc. many different disorders over the years in the DSM.  Now I admit that I have not looked at it recently.  But there was a time when ADD and ADHD were different forms of Attention Deficit Disorder.  Then the definition was changed and they weren't.  Which was a real disservice to girls who typically do not have the hyperactivity aspect as often.  Stigma or no, it certainly affected diagnosis protocols.

This will do the same thing.  I think anytime we lump a smaller group into a larger group, we lose distinctions and these aren't types of mushrooms we are talking about.  These are people and distinctions can make all the difference.

I have known many children who were diagnosed with Aspergers.  They DO function differently than children with other forms of autism.  I don't understand why there is a movement to eliminate this sub-category of Autism.  I don't know any parent of an Aspie who will deny their child is indeed autistic.  But just like you can be paralyzed anywhere from the legs up to your entire body and, as a result, have very different needs, you can have different forms or levels of severity if you will of autism and a resulting variety of needs among people.  This isn't about stigma.  This is about recognizing the individual.

Good luck.

... according to you, for me to distinguish between folks who will never be able to live independently and those who are "quirky" but ultimately self-sufficient?

I resent the implication that by wanting individualized services and recognition that my son (and others like him) deals with an impairment but should not be lumped in with those who are profoundly disabled (because there are different needs there) somehow increases the stigma present on autism. While I want greater understanding of ALL autism spectrum disorders, I happen to think that part of how that happens is education on how differently the various disorders can present.

My comparison involving Einstein was meant to demonstrate the difference between impairment that either allows for or precludes independent adult function, that's all. I'm sorry you took offense.

I maintain that lumping it all together decreases our knowledge, rather than increases it. That, of course, is my opinion.

--
Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

I have to say I disagree - I think its great that the DSM is changing. The Aspie/Autsie division is unnecessary and causes a lot of division in our community for no good reason. You say you are concerned about stigma - why is there stigma? Its our job as parents to get out there and raise awareness, to change the stigma. By holding on to the AS label, you are increasing that stigma for the children with autism - adding to it by ignorant comments such as comparing Rainman to Einstein. That comment shows little understanding of Autism Spectrum Disorders as a whole, and little historical understanding also - Einstein did not speak until he was nine, and was known to be echolalic - that would suggest AUTISM, not ASPERGER SYNDROME. Does that make a difference? To me, not really. But for some strange reason, it does to you.

Maybe you need to rethink what autism means - your son is more than technically autistic. He is autistic. And that should be OK.

Our sons have Autism and PDD, depending on who you ask. Their docs refused to give the Asperger's diagnosis, I think, because of DSM5.  I'm at the point where I don't care what it is called, so long as they receive the services they need.  But I'm also worried that without the differentiated diagnoses, kids who previously qualified for services with Aspergers will now be left out or not qualify.

That said, my son knows he has autism (not PDD, not Aspergers, which some doctors insist he has) and never passes up an opportunity to tell us his brain was in a different time zone, or that was his autism talking, or "Hello!  I have autism, remember?"  He's so smart he learned how to use it as an excuse. Dang kids.

Still doesn't change who he is, though. But I agree. Don't like the removal of the term one bit.

Domestic Engineer, Total Babe and SAHM