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I live with a disorder that an increasing number of people describe as a spectrum: epilepsy. Some people with epilepsy experience irregular simple absence seizures in which they may stare off momentarily without anyone really noticing. Others suffer — and I use that word purposely — through regular, sometimes hourly, tonic clonic (grand mal) seizures. These are what many people think of when they hear the term epilepsy, but the reality is that epilepsy means many different things. It is up to you, as a person living with the disorder, to explain the kind of seizures you have (or the "end of the spectrum" you are on).
People who live on the autism spectrum similarly experience many variations of their disorder. Those with mild autism are often diagnosed with Asperger's syndrome. They often have difficulty with social interaction and sometimes experience repetitive behaviors or speech patterns. But, unlike many other people with more severe autism, cognitive development is not affected. Some people with Asperger's credit their disorder with increased intelligence or artistic strength.
Last week the American Psychiatric Association released proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders. The revisions included a recommendation to drop the term Asperger's, ultimately diagnosing everyone as being on the autism spectrum instead of singling out those with Aspergers. What do you think of this proposal?
Do you, or does someone close to you, live with autism or Asperger's? Should they be classified together or separately? Do you live with another disorder, like epilepsy, which has many variations? How does your experience influence your thinking on this change? What are the benefits of being "on a spectrum" as opposed to singled out?
GUESTS:
- Darryn Sikora: director of the autism program at Oregon Health and Science University's Child Development and Rehabilitation Center
- Jonathan Chase: person with Asperger's syndrome and a board member of the Autism Society of Oregon
- Rose Case: mother of a 25 year-old son with Asperger's and the secretary of the Portland Asperger's Network
Photo credit: Phoney Nickle / Creative Commons
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Well, I may not have a Ph.D. to my name, nor an organization behind me, but I do believe I am the first commenter to whom the proposed change in the DSM 5 would directly affect. I was diagnosed with Asperger's Syndrome(AS) when I was fairly young. I personally find that when I explain what AS is to people and I use the terms Autism or ASD, they immediately make certain stereotypical assumptions about me that are quite untrue. I believe that AS is a distinct, though related, diagnosis. People with AS have different needs and challenges than those with an ASD. I feel that AS should remain a separate diagnosis from ASD.
John Roberts
University of Oregon Junior
Aspie (That is a person with Asperger's.)
Member of the U ACESSAbility Student Union http://www.uoregon.edu/~aability/
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A close friend of mine who lives in Oregon informed me of this discussion. Both my son and I have Asperger's. And I am very much against this decision to revise the DSM, intellectually and emotionally.
My biggest concerns are that for all those services this will supposedly qualify us for, there will also be many doors that slam shut. For example, I think people will deny jobs to "Autistic" people on this basis. And I'm certain that many schools will place children with Asperger's together with LFA children -- a situation which has been hard enough to fight before this change.
And as John mentions, the root of the problem is simply that the majority of people out there will draw false conclusions about people with Asperger's and think of us as "Rain Man," basically. I think the psychiatric community is insensitive to the fact that the general public does not consist of clinicians -- we have to live in the world and given the challenges we already face, god knows why anyone would make it harder for us.
This insistance that "Autism is a spectrum" does nothing to alleviate my concerns, either. Certainly I have to acknowledge that's true, but if you don't arbitrarily stop it somewhere, wouldn't every human being on earth fall somewhere on the spectrum? Everyone shows signs of autism to some degree. And even if I grant that it's 100% true with no room for discussion -- still, why would you want to apply that truth in a way that hurts us?
And the comparison of "mild autism" to "mild pregancy." That's very clever, but totally wrong... whatever the credentials of the speaker may be. Yes, you can have mild autism and particularly as an adult you can employ coping strategies that make it seem to most people like you're more or less normal -- maybe "quirky." Someone with "low functioning autism" can't do that and I don't know what either he or I would gain from being considered to have the same condition. And any objective observer would see that we're different.
- Kory
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I agree they need to be kept separate. I have a son with Asperger's at UofO who is also a junior and doing well. He was diagnosed very young with PDDNOS and later "refined" to Asperger's. As a parent watching my son navigate through his life so far - people definitely react differently if you tell people Asperger's is on the Autism spectrum or not. Although extremely bright, Aspie's don't need the additional Autistic label. The general public does not understand AS or ASD enough and will discriminated against further with an Autistic label - both socially and in the work place. I believe that the American Psychiatric Association is attempting to make their diagnostic lives easier by folding the Asperger's diagnosis in to the Autistic diagnosis. The Psychiatric Association needs to "walk in the shoes" of these people and understand what they would be doing to these people socailly!
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I have only know about Asperger's Syndrome for four years, when I discovered I have been one all my life. I was always mainstreamed as no one else knew what seemed to be my problem either, through the 1950's ( I was smart enough, even gifted, but the consensus of my educators and parents was I wouldn't just 'apply myself!' to live up to my supposed great potential)
So then I found out I had this Syndrome, and was told it wasn't so bad, really, I should just brush off the fact I couldn't recognize faces and body language and didn't feel some emotions and others I felt far too deeply, and just get on with my life. After all, it was simply 'mild' autism, not like I was "_autistic_" or anything.
Now I have the 'one size fits all' label. Frankly I am afraid of evaluations at my work when before I was Asperger's Syndrome and now I am 'autistic' with all the baggage that word brings with it.
How is this beneficial to _me?_ I don't think it is. However, someone else other than me are the ones that need to be satisfied and I should just sit on the back of the short bus and lick the windows, I suppose. No wonder the "disabled" go so rabidly radical in protests. No one likes to think they are 'less than.'
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There seems to be a running theme here that most people with Asperger's think this is a terrible idea and most Psychiatrists think it's a great idea. I'd like to think that will make them rethink the decision, but I sincerely doubt it.
And I know exactly what you mean about the "live up to your potential" comments -- that certainly brings back memories.
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Thank you to OPB for bringing up this issue.
As a person who's probably 50/50 aspie/nt with a daughter that has been diagnosed with Asperger's (not to mention a whole host of other things along the road to this "conclusion") if this change is made and all persons with Asperger's are reclassified as simply "autistic", I'll be sure to get my daughter in for a rediagnosis. Perhaps ODD? At least that label won't be more detrimental. It's tough enough being partly aspie (for me) and very tough for her (sorry to all of you out there that get the "live up to your potential" lecture, I hand it out too ~ any better recommendations?).
I agree wholeheartedly with the comment about every person could fall somewhere on the spectrum. To find someone 100% NT (neurotypical) would be a rare thing indeed.
Should we lump all the cancer's into one generic term too? "Autism (ASD/Asperger's etc)" is just as varied and can be just as debilitating -or- just as tolerable depending on what life deals you.
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I give the same lecture to my son... so not really. The only thing I try to do is reframe it in terms of, "If you want to be successful in the world, then you will have to do (whatever it is)." "If you don't want to repeat a year of high school, then you have to get the required number of credits to graduate."
In other words, I guess I try to be mainly factual in my approach and include mention of the consequences or rewards for whatever the action is.
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My younger brother was diagnosed with Asperger's a few years ago, he had been previously diagnosed with ADD. He has struggled throughout his life with school and just staying organized in general. However, his condition is far from what I would consider Autism. He is very inteligent, definitley well above average and I dont think it is fair to classify these people as autistic which insinuates a mental disability. He is very successful in his career and I fear that if he were considered Autistic the perception of his talents and abilities might be unfairly skewed.
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Why is Attention Deficit Disorder, Autism and Asperger's Disease disproportionately MALE?
By Some studies 80% of the affected are male.
Is this part of the reason of male academic underachivement?
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I do not have the official data on this but I do believe that several of the factor for AS, ASD, and ADD are connected to the Y chromosome, and recessive X linked genes.
John Roberts
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I don't know why, but it certainly is true. I suspect that there has partially been a shift in our society toward defining characteristics typical of young boys as aberrant and idealizing certain characteristics typical of young girls. Something is definitely really there that results in the concepts of ADD, Autism, and Asperger's, but along with that I think we've become more biased in that direction than we used to be.
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I often read the symptoms of Asperger's and think, hum, sounds like me. Not, so, bad is it? Perhaps, I should get a screening, it might be nice to have a name, and excuse, for the malady that is me! Moving on...
Let's get to the meat of it. The Aspergerians don't want to be labeled full on autistic, cause they don't want to be identified with people they think are completely 'retarded' (sorry but that is the word I was looking for). Maybe, they have a point, the spectrum is wide, from mild impairment to a total mental or cognitive disability. But, who does this help? Are they motivated by accuracy? Or, a 'we don't want to be associated with you lot?' I feel empathy and compassion for everyone with autism, but, dumbing the disease down, into the 'haves' and the 'have-nots,' is not the solution.
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It's not about retardation. I see that most of the arguments in the media, not just your post, tend to dismiss our concerns as motivated by ego or other frivolous concerns. The one that shocked me the most was basically, "Autistic people resist change, so of course this bothers them."
I don't have anything against anyone who suffers from any condition. But objectively when I look at someone who's autistic and incapable of functioning as an adult -- my belief about that person is that they have something different than what I have. It is true that I don't care about accuracy to the extent that if we share a common imbalance in our brain chemistry or something, I don't feel that is the most pertinent thing to focus on.
Is there a reason I should want to be associated with these people? Would it be good for them or me? Do you want to be associated with these people?
I don't understand why so many people write off our concerns as motivated by ignorance or egotism. And Asperger's is not an excuse for who we are, either. In fact, I think you really have to kind of hide it and pretend to be normal in order to function in the real world. That's how I've lived my life and how I raise my son, although it is helpful to know exactly what you're hiding, fighting, coping with, however you want to put it.
And that's really the crux of it -- people with "low functioning autism" can't function in the real world. Why should people who do function, albeit with stressors that deviate from the norm of society, be considered with them? We also typically have advantages that differ from the norm of society.
For every story I could tell you about becoming hopelessly lost while following apparently simple directions, I could also tell you about some time I creatively solved a problem through applied nonlinear thinking.
What this whole situation really tempts me to do is tell my son, "Forget it, you no longer have Asperger's. Don't ever talk about that again."
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kueijin1,
Thank you for your response.
What is your motivation for the hard line distinction, though? I feel like you didn't really give another reason other then 'because we are so different.' Maybe that is reason enough? But, many diseases have wide degrees of severity. What about Lupus? Or, take depression---some people with depression have a mild-grade or low-grade depression for most of their lives, then others have a much more severe and totally debilitating depression. The need seems to be a social need, motivated by a desire for separation. I can understand it. But, I just don't believe it is necessary. A superficial, perhaps pride-based, name change won't rid the world of the stigmas we like to throw around.
It isn't particularly 'a good or bad thing'...it is just an accurate term. Our response to the terminology, is the 'good or bad thing.' Our responses to how we view and treat people with these diseases are what need to be changed.
P.S. By 'excuse' I wasn't downplaying or talking about autism, I was referring to myself and my often lackluster personality. It would provide me with an explanation. That is just a 'thing' that would leave me less confused.
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Scott,
I can't change the world. My biggest negative concern is how the world will treat my son if they view him as "Autistic" and to a lesser extent how it would treat me if I chose to seek a diagnosis later on. I think it would cause him needless pain and more than that, it would subject him to even more misunderstandings. On a day to day level these decisions aren't always admistered by people who understand every nuance of what the DSM intends. More often I see educators who already talk about my "artistic" son and already equate the two conditions.
Next my question is where's the benefit? We could be qualified for an additional range of services in some cases, but I've always viewed the end goal as mainstreaming and living as successful of a life as possible. So I hesitate over jumping for joy at the prospect of my son more or less wallowing in additional services that might make his life less stressful, but that strictly speaking he could do without. If I thought of anything about our lives that this decision would make better, then maybe I would resist it less. But I can't.
Also a technicality -- neither Autism nor Asperger's is a disease.
Depression is an interesting example and something I have some experience with. It is clear to me that society treats the suicidally depressed very differently than it treats people who manage to live normal lives with bouts of sadness and anxiety that are difficult to bear, but that don't result in suicidal ideation or an inability to hold a job.
And about "pride"... is it pride? I have to admit that yes, maybe it is partially about pride. But why shouldn't it be? After some 20 years of developing and using coping strategies to get through life, I guess I feel entitled to feel different than someone who constantly self stems and seems oblivious to the world around them. We all have commonalities and these people deserve our respect and compassion as human beings. But I don't see how it's in any way respectful to pretend to be like them when you're not. It's not a hateful opinion. I would like to help them. But I'm no more the same as them as anyone else in society who successfully gets by from day to day.
- Kory
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Kory,
I agree with, and understand, all of your points. I suspect that some people may have the opposite view, that separating the 'disorder' into separate groups turns it less into a spectrum and more into a case of only extremes---and then how do you determine exactly where that line is. Will it create fewer shades of gray? I suppose, like the spectrum, the solution won't work for everyone. And, sometimes putting too much emphasis on a label or category can, in a way, give it more weight then it deserves. Whatever 'they' do, or do not, decide, I hope it helps the greater number of people.
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My son was diagnosed with PDD (Pervasive Developmental Disorder) at 3yrs old we have had trouble assisting him with functioning social in school (he is now 8) as there is very little on this. Where can we go to get assistance for him ?
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Your education service district and school should be helping you. Does your child have an IEP? We were at our wits end with our aggressive, intelligent, frustrating, frustrated child, about to pull him from public school and homeschool him, when the district mentioned that there was a "social communications" classroom. Our child is thriving there in 2nd grade, after 2 very difficult years in a regular classroom. He gets to do his advanced studies with a neighboring 3rd through 5th grade classroom, while working on his social skills and writing with his K-2 grade classroom.
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Hi Christinalinn,
I am opening a school and therapy center for children with Autism and related disabilities. Check out our website.
http://www.childrensresourceservices.com /
Good luck in your search!
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As a newly graduated PsyD in Clinical Psychology and the mother of a 5 year old son with high-functioning autism, I have intense interest in this topic. As a clinician, I use the DSM as a method for communicating with other clinicians; as a way to get coverage from insurance companies; and as a guide for directing treatment. As a mom, I work very hard to make sure the DSM does not define my child and put limits on what he can do and where he can participate.
Another area of consideration is communication with non-clinicians, particularly in the realm of education. Asperger's has less stigma in our society and there is not fear of behavioral problems that have been associated with the autism spectrum label. I have often described my son as having Asperger's with speech delay - which is an absurd phrase from a clinican's standpoint because Asperger's specifically rules out speech delay- but I have used this phrase to success with non-clinicians to explain in a short-hand way that my son does not have behavioral problems, is cognitively bright, but struggles with speech.
In viewing the DSM as a clinical manual, it is important to define a set of symptoms in a way that is most inclusive and provides the best clarification. Since autism is not a unified construct, but a broad set of symptoms, diagnosis is tricky and is not particularly useful for defining the individual. By creating an umbrella category, "Autism," it does make it easier to argue for clinical necessity and therefore access to services; but unless we more clearly categorize specific symtoms under that umbrella, we are obscuring individual experience and making treatment more difficult. It is my hope that we end up with many specific diagnostic names under the general "Autism" category, reflecting differences in etiology, prominent symptoms, severity, and prognosis.
There is some precident for having an umbrella diagnosis and specific sub-categories. Schizophrenia has broken down over the decades into bi-polar disorders I and II, delusional disorder, schizo-affective disorder, and personality disorders. It is my hope that Autism will come to have more specific diagnostic names as we learn more about its causes, symptoms, and treatments. Perhaps in the future I will descibe my son as having "Autism I" or "Autism I, primary speech delay" and clinicians and non-clinican's alike will have a clear idea of his individual set of symptoms and an idea of his capabilities.
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I found your post very interesting and think that the way you describe having to treat the same thing in two different ways depending on the situation really points to the main problem.
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damn skippy (that is, I agree completely).
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at this very moment, my ten year old daughter is exhibiting textbook
behaviors of sensory modulation disorder. she is 'out of sync'.
this is extremely difficult to deal with at home. yet, at school, she is a model student.
we are not finding any treatment that works, and are ready to pursue medication. your opinion? please help us; we love her and yet she is driving us crazy. ...mom, dad, and her two brothers
FYI, our 18 year old was diagnosed by dr. sikora and her team at ohsu, 6 years ago with aspergers. he is extremely high functioning and has done well in school. he has a quote, 'normal' younger brother
but their sister is now an even tougher situation. hence, two types of ASD presentations in one house. feel free to call me....(linda,anonymous....503.740.5848 thanks
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I'm a huge believer in learned coping strategies over any form of medication. I would physically fight someone before I let them medicate my son and the suggestion has come up quite often, especially when he was younger. But ultimately how you raise you child is your business.
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For my daughter, we didn't get an Asperger's diagnosis until she was about 11. Along the way we got every other diagnosis (ADD, ADHD, ODD, PDD.....) anyhow - at one point we did go with meds (ritalin and the like) and while they helped some they also produced other difficulties and masked some of the other problems that needed addressed. Meds won't fix the problem but they may help with the right support. Talk to as may professionals as possible. Work with your local schools, get an IEP or a 504 plan and best wishes.
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When people hear that my son (now 8) was diagnosed with Autism/Autism spectrum disorder (PDD) they at first do not believe it. It isn't until you spend some time with my son that you start to notice the difference between him and an average 8 yr old. In alot of ways he is where he should be and in alot of ways (mostly social) he is behind his 5yr old sibling. IT is frustrating as it makes it harder to find him help/assistance and causes social problems in school and with other children.
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An the hardest part is when you have to make changes to how you raise your child and other people don't "see it" and think you're just making something out of nothing.
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There is an amazing Video about a surfer with Asburgers. His name is Clay Marzo and is one of surfings most promising young athletes. Possibly one of the best surfers in the world. Check out "just add water" by quicksilver. An inspiring true story with alot of info about the condition.
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We live in Corvallis, which I believe, has an unusually high number of Asperger/Autism Spectrum Disorder kids in the schools. My 14 y/o son has Asperger's. We have been through the wringer, trying to get him the services he needed, and trying to get a diagnosis which would allow him to get an IEP in school. This began at 2nd grade, testing by OHSU in Eugene, the result being PDD, which was MOST unhelpful. Again, in 5th grade, we decided to try going through the schools (ESL) and we finally, got a more helpful diagnosis of Autism Spectrum Disorder (ASD) so he qualified for an IEP (Indiv. Educ. Plan).
He finished his first novelof 65,000 words last November, and seems to have found his niche--for now. High school comes this Fall and that will be a new challenge. I wish he were home today to respond to this discussion! Thanks, OPB for doing this topic,.
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I have a 12yo son (6th grade) who is gifted and, yes, has "mild" Asperger's. His traits are severe enough to warrant an IEP and special ed, but not severe enough for us to seek a medical diagnosis. He is in the SCC (Social Communication Classroom) program in Beaverton, and it has been a godsend for him.
In 4th grade (when he first went to school; we homeschooled previously) he was constantly in trouble, and had lots of difficulty, mostly sensory, in the school environment. In the SCC classroom, where he was placed in 5th grade, it was calmer, quieter, and he received the constant feedback he needed to learn to regulate his own behavior.
The schools and his teachers have always been very supportive and positive, and he has not been targeted for bullying by other kids.
For us, it is enough that the school recognized his impairment, and didn't require a medical diagnosis. Though he has a vague idea that he has Asperger's, I rarely use any label when talking about him where he can hear.
I don't give the "live up to your potential" speech, but I do say that I expect him to control himself, and to act in ways that don't get him into trouble. I also point out to him that certain behaviors can help him keep friends or avoid making himself a target, but I let him decide for himself how he wants to present himself.
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If someone thinks they have Aspergers, is there any reason to or not to go to a professional to get it officially diagnosed?
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Absolutely. There are many reasons. For example, the US goverment is quite likely to deny a security clearance to someone diagnosed with Asperger's.
The only reason I know I have Asperger's without any doubt is the experience of raising my son, who does have a diagnosis.
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The Clay Marzo surf movie is a great example of what an individual with Asburgers can accomplish. Truely inspirarional.
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As the parent of an adult son with Asperger's syndrome, I don't think it matters to him (and certainly not to me) what you call his "disorder". I know many people with Asperger's syndrome, including my son, who are successful in relationships and in work,and in most cases, their friends and coworkers aren't even aware they are considered to be "disabled" at all! I'd like to add that I think we spend way too much time putting labels on things, and not enough time getting to know people who are different from ourselves.
Meg Hicks, Eugene
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We discovered that my 10-year-old son has Asperger's when he started kindergarten. We didn't need to have him evaluated for assistance in school until 4th grade. He is extremely smart (definitely has the "little professor" characteristics), but has a lot of trouble with social cues, accepting change, fixation on particular subjects (for him it's dragons), very gifted in art, etc; however, he doesn't have the extreme problems with sensory sensitivities (aversion to sounds, textures, etc). During the school evaluation, there were 4 check-off areas in order to qualify for autism assistance and although he has the three most important characteristics (such as inability to read social cues), he did not qualify for help because he couldn't check all four "boxes" (with the fourth box being the sensory elements). I don't know if changing the definition of the diagnosis would offer him any more help because he was already evaluated on the autism scale. If anything, we need to keep the Asperger's diagnosis and have a separate evaluation in the school so that my son could get professional help in learning skills in how to cope with his "differentness". I definitely think there needs to be more resources for kids with Asperger's and autism.
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My 2nd grader is currently being evaluated through the school for sensory integration disorder/autism spectrum. He's extremely high functioning; if he'd never entered the school system, I would not have suspected that he had any issues.
If I thought there was a chance my son would be labelled "autistic," I would not have him evaluated. Asperger's is different, to my mind. Asperger's MEANS high-functioning.
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I have a child who very likely has Asperger's. She's being tested right now. She shows a lot of the classic symptoms, and her school has been great about helping out with this.
It doesn't really matter to me whether she is diagnosed as living with Asperger's, autism, or PDD-NOS, as long as she gets some of the occupational therapy and services she needs to succeed at a lot of the things that NTs take for granted.
I am not so worried about the label. I am technically an epileptic, but I haven't had a seizure in over thirty years. Still, I know that labels can carry a lot of baggage so I sometimes spend a lot of time explaining to people that there is a spectrum. I see that I will likely be doing the same thing for my daughter while she is growing up.
Adam
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What's frustrating to me about these conversations is the focus on the way it USED to be--the whole idea behind the change that the psychology community is proposing is to reflect the way it is NOW. Please remind listener's that it is Autism SPECTRUM Disorder. It is unfair to continue to categorize an autistic individual as one who doesn't speak, has no social skills, etc. Yes, that was likely the view 20 years ago, but it is not today's reality. The increase in ASD diagnoses is on the rise and there needs to be a more accurate reflection of the variances that individuals exhibit on the spectrum, including Asperber's--which, by the way, also has variance in how people function.
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That's a completely valid point, but it doesn't change the fact that it will take Joe Public 20-50 years to figure it out. And we have to deal with Joe Public tomorrow and the next day.
In addition to the false impressions it will give him of people with Asperger's, eventually he will come to have false impressions about Autistic people.
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My son is four years old and on the high functioning end of the austism spectrum. We're told by the specialists who work with him that if his language hadn't been delayed as a toddler he would be daignosed with aspergers. He caught up quickly - he tests well above his age group in both receptive and expressive language and reads at a high level - but he'll never be eligible for an aspergers diagnosis because of the initial language delay. In this way the aspergers diagnosis can seem unfair and sort of arbitrary. I say we merge the aspergers and autism labels and put more effort into fighting the austism stigma.
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It's a real shame that so much emphasis is placed on language delay, because frankly when you're 25 years old it makes no difference at all whether you started speaking at the age of 2 or 5. Personally I think HFA and Asperger's are very likely the same thing or nearly the same thing. I just don't think "Autism" is the most appropriate label for it.
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As a mother of an 18 yr old misdiagnosed as ADHD for the first 10 yrs but finally diagnosed by two separate professionals in two separate states as having Asperger's Syndrome, it was a relief to have some "name diagnosis" to begin a treatment plan that might acutally be beneficial for her.
I don't believe that this change will be beneficial for the individuals or the parents/caregivers. In my opinion it is going to create a way for physicians, professionals and clinicians to "get off the hook" of doing a complete and thorough diagnosis process. I also believe that it won't streamline or make services more available between insurers, school districts and other resources because there seems to be a gap between definition of Autism thereby school districts don't have the same criteria as the medical industry. If this change removes that gap, then there may be some benefit but if not, then it doesn't help.
I am the current Executive Director of InventSuccess who targets youth and young adults on the higher end of the Autistic Spectrum (generally IQ 79 and above) to provide educational, vocational and individualized training programs to help them become financially independent, self-sustaining adults and contributing members of their communities.
With or without this change, we will still have the same problem we have currently with this target population, which is a graduated or non-gratuated individual who hasn't been given the proper education, guidance and support to be independent after high school.
There is the additional problem that with this change there will come a cost of "higher priced services" because it could be construed as a more involved or complicated process to work with these individuals.
With Asperger's or High Functioning Autism, it seems to be perceived that those with this diagnosis will require a specific set of therapies that are less involved than someone with classical Autism. Those with classical Autism and multiple other issues will need additional therapies to help them achieve a level of independence if it's in their ability. That is still, in my opinion, a necessary target for these individuals.
Why can't we just move on to the problems at hand...educate these young people, train them in their passion or strengths and support them to be come independent adults!
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Because the special education procedures require a label before a student receives services, there is a LOT of time and energy (and money) spent on "getting a label." But people are all so different, just knowing that a student has "Asperger's" doesn't really tell a teacher how to set up a classroom or teach reading. I think we would be better off if we spent more time figuring out how to match student needs with services and less time arguing about this label or that label.
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I am for joining the two diagnosis if those with Asperger's will receive more benefits. My brother has Asperger's. He is 18 and graduating from high school this year. He has received some special care through the school district he is in. My main concern is that he does not qualify for certain benefits, such as worker training skills and training for living on his own. He can likely live on his own because he is high functioning, but he needs job skills. His math level will stay at a fourth grade level, but he is very intellegent in other ways. I wish there were more pograms available for those becoming adults. Once he is done with school there really are not many options available to him.
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My son is 5 years old and has no speech, but he is very intelligent. Autism testing was preformed but no response back from the Autism Society, so what other specialized services are out there to help me diagnosis my son's condition?
Please e-mail or call me and let me know,
brandydoblado@yahoo.com
503-473-5897
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Someone on the show mentioned "Bones" as a TV show friendly to Asperger's...
I find this incredibly interesting.
I watched one episode of "Bones." What I took from that episode was that it is a typical, formulaic network show and that it portrays intelligent people as socially inept for the sake of trite comedy. In fact, my parents thought the show was funny for precisely that reason: "Haha, it's funny because she is smart but totally socially clueless."
I have the same opinion of "Big Bang Theory." I was blown away when my mom told me that she finds "Big Bang Theory" funny because it reminds her of my high school friends and me (we went to a magnet school for math, science, and computers). The show was so trite and obviously a caricature of intelligent people.
Anyway, it never occurred to me that Bones is supposed to have Asperger's. I just saw it as the networks continuing the tradition of the whacky negro or the booksmart Asian. Racial stereotyping is not acceptable anymore, so fall back on the nerd stereotype and really push it to the extreme.
In fact, knowing now that Bones is supposed to have Asperger's makes it that much worse to me.
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I had the same reaction to The Big Bang Theory. The audience is supposed to laugh at the earnest, sincere behavior of the characters?? I find that incredibly offensive.
I recall watching "Head of the Class" when I was a kid. It's not on DVD so I can't revisit it, but as I recall, it was much more sympathetic to its characters.
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The only character I can think of who appeared on TV that clearly had Asperger's is Spock. :P
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Actually, Grissom on the original CSI always struck me as someone with AS.
On another note, it has been shown that Albert Einstien was throughly an aspie. do you think that society would have the same opinion of him if he was/is labeled as autisitic?
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Albert Einstien was respected because of what he did, not how a diagnostic manual classified him. There have been great men and women throughout history who had struggles and were not identified by them or held back because of a label.
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Einstein typically gets pegged retroactively as Autistic, Asperger's, and/or the MBTI type "INTP." Since he had an early speech delay, my best guess is that he might have been diagnosed "HFA" in the modern world. But ultimately his achievements forced society to acknowledge Einstein's worth and ability. It's hard for me to imagine someone who was so involved in practical work taking the time to seek and publicize a diagnosis.
If anything, in my opinion the example of Einstein points toward the advantages of remaining "closeted."
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My family, which has Aspe members, do feel the way "Bones" and "Grissom' are portrayed do shed a possitive light on Asperger Syndrome. They also enjoy the Aspie type humor that comes through.
The main strength of these shows, hopefully, is to get people in businesses, government, school districts to understand that Aspies do contribute, big time, to their areas of experise. Hopefully, it will encourage them to provide the services Aspies need to reach their fukk potential, be employed, pay taxes, boost the economy, instead of marginalizing them.
Without Asperger's most of the invention we take for granted (radio, automobiles, refrigeraton, flight, computers, weather predictions, video, .........space program, scientific and medical advances), come from the talents and tenacity of people witih Aspegers.
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I commend Emily and the TOL staff for this great discussion today but they forgot the left handed people, who are most of autistic high order type that fall under this classification. I just talked randomly to a couple in a restaurant the other night. They told me of their three year old son is reading medical journals already at his age but that he does not go well with the others in social class settings. He has too much energy and is too creative but is strangely disconnected with others his age. He talks excessively. He is aloof and disconnected when with a group his age. I asked, he’s left handed isn’t he? Yes! His mother answered, how did you know? Earlier a few months ago, I saw a young lady sitting in a restaurant appearing to read several books at once, fiddling alone. I feared she was imitating me sitting a few seats away as I went over to ask her that she dropped something she could not find, wearing thick glasses not aware she dropped a book under the table. She immediately introduced herself and added the term high order Autism or Aspergers. She said she was left handed but they forced her to become right handed.
I was brought to tears today when I listened to the earlier guest describe his conditions in grade school as it sounded exactly like my early life and experiences labeled as the artist, intellect, bullied by others. Then suddenly fired after 20 years in my career, unable to explain why. Persecuted is the word that comes to mind. I was recently evicted from the home I designed and built, after twenty years. Do I get it back soon when they decide now through new diagnosis that they abused an Autistic person by making him homeless?
The language of diagnosis seems flawed- Why not the following term? “Awesome Incidental New Order All Encompassing Cosmic Spectrum.” *See >http://en.wikipedia.org/wiki/Left-handedness
It is surprising to find that the highest achievers in life seem to be left handed people- and ironically it includes all the greatest artists, thinkers, writers, leaders, etc. who also run a high chance of being Autisic-Aspergers but why are we are eventually persecuted for this?
-Mark Seibold, forced to retired IT Tech-Consultant, Artist-Astronomy Educator, Portland OR
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Although I don't think there's anything wrong with left-handed people, I'm not so sure about the accuracy of your assertions.
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Kueijin
I know, I get it all the time. People just want to deny the reality of left handed people and especially if they are right handed, they take offense to it. That is why I say start with the Wikipedia chapter. Ask your doctor if you want a certified medical opinion of this. Don't take my word for it. I have only lived through 55 1/2 years of this. . . ?? (; I could tell longer stories here but they limit the sites comments now to 2,500 words. Do you think Bach, Mozart, Beethoven, Leonardo, Michelangelo, Rembrandt, Einstein, Feynman, Pauling, Gates, Jobs, Wozniak, etc. is not enough of a list to rest the case? Read more in researched sites. Good luck and enjoy, -Mark
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It was great to be on today, thanks for having me! Very interesting discussion here, in my opinion the most important thing is how we move forward, not looking back with regret. Educating the public and education system about Autism and Aspergers is not easy work and in both cases the same kind of work and information is required. Why do we want to do the same job twice over? We're all in the same boat and working to reach the same benefits and opportunities.
As for resources, I work with the Autism Society of Oregon at www.oregonautism.com as well as the Portland Autism Group (for Professionals) and the West Linn Game Club, which is a wonderful social group for families who have a child on the spectrum who is able to play video / card games and socially interact with others of a similar age group. There are many wonderful resources up north at the University of Washington too, they have a massive Autism research department.
ASO is hosting the 8th anual Autism Walk-a-Thon on April 18th at Oaks Park.
If there's anything I can do for the community or you would like additional resources you are welcome to contact me directly. I am also available as a consultant, primarily to come into IEP meetings and assist in planning.Thanks!
-Jonathan Chase
http://www.jonathanchase.net -
Thanks to all for being on. I'd recommend the work done by Temple Grandin. She's been on Fresh Air (NPR) and Talk of the Nation (same). She's an author, inventor, and an amazing advocate for people living on the spectrum. She's also made recent comments regarding Asperger's and ADD/ADHD. She is worth looking up!
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This was an interesting program, I just listened to learn.
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I too just listened to your program and found it lacking.
I was diagnosed with Asperger's Syndrome 5 years ago, when I was 55. The diagnosis did help explain why I am who I am and why people were so frustrating to me; and why they are so frustrated with me. I have had a long an varied career (IT, radio newscaster, security director, project manager... the list goes on.) The longest I ever survived at a job was 2 years, with the shortest less than 1 day. I have been called immature, lazy, arrogant know-it-all, SOB, the smartest guy in the room, the dumbest person on the face of the planet, etc. Even after I was diagnosed the poeple I worked with, including my various managers, didn't know about Aspergers, didn't want to know, and worked as hard as they could to get rid of me as qquickly and legally as possible (I have been laid off due to "company cutbacks" more times than not.) On the rare occassions I was "allowed" to explain about what Aspergers is, as soon as I used the phrase "autistic spectrum" the person or persons listening would take a step back. I don't know if their expressions were of pity or disgust (one of those annoying little deficits we Aspies share,) but soon there after I was again among the unemployed.
So would eliminating the seperate diagnosis of Asperger's Syndrome be of benefit to one with it? Likely not. The majority of the so-called "average" individuals (or neuro-typicals (NT's) as we call them) only understands "autistic" one way and one way only, and they really don't want to be relieved of their ignorance. No matter what label you give a person, so long as the NT's preceive that as being "different" they want no part of you - it's as if you have a deadly, highly infectous disease and your being any where close to them might infect them.
Now, I can only speak from my experience, which has not been good. However, given the large amount of experience my 60 years have given me, I feel that I can speak with a certain amount of authority on the subject.
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I found this to be a very interesting discussion. For a few summers, I worked at a summer camp. Over the summers I spent there, I worked with a few campers who have Aspergers. In my experience, these campers had very differing levels of the disorder and from that had varying needs as well. As with any child, I believe that each one is unique and has specific needs. So, though I understand that eliminating the term Aspergers and classifying instead on an Autism spectrum may make sense in the medical world, it seems to me that this will worsen the problem of labeling and classifying people in every day life and result in less specialized attention.
If the mother's of the campers had told me their sons had Autism, I would have expected their children to behave in ways that I have been raised to associate to Autism, which are the more extreme cases in the spectrum.
By keeping the classification of Aspergers, I think it is easier for non-medical people to understand. I am sure that the term Aspergers in itself creates generalizations that people with the diagnosis already have to combat. With the way Autism is looked at by the general, non-medical public, these generalizations are even more intense.
I was able to provide the attention or care that each of the campers needed specifically because the mothers could use terminology that in general language described more specifically the campers disorder. That is not to say that Aspergers can define these campers either. Like I said, every child is different, but the term Aspergers is a starting point and learning about each campers specific needs goes from there once the parameters are set.
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This is a smart blog. I mean it. You have so much knowledge about this issue, and so much passion. You also know how to make people rally behind it, obviously from the responses. Youve got a design here thats not too flashy, but makes a statement as big as what youre saying. Great job, indeed. Ferrari Rundfahrt
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also have found that many people balk at label "Autism" but those same people accept Asperger's. Sometimes nomenclature is simply that. It doesn't change a persons abilities it is just words on a page. At this time, at least in Oregon I have found that person's with Asperger's are granted the full benefits needed. It just takes a huge amount of work.
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This was one of the most well documented blog entries I have read in a long time. It was a pleasure to fill all the gaps I had about this topic. Well written an concise.
Thankyou.
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My younger sister is 18-years-old and has autism. I have friends who have Aspberger's syndrome. I think the two disorders are very different even though they are both referred to as autism spectrum disorders.
I don't think the term Aspberger's should be dropped because to me, Aspberger's characteristics are very different than autistic characteristics, based on those who I've encountered with each disorder.
Having both terms helps people start to describe the person's condition. However, each person should be treated on an individual basis. People should not assume that someone with autism or Aspberger's acts the same way as everyone else with that condition. That's why there are terms to describe those on the autism spectrum.
-Laura, Eugene, OR