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Self-Diagnosis and the Adult with Asperger Syndrome

By January 2, 2010

Asperger Syndrome (also called Asperger's disorder) is one of the autism spectrum disorders - a pervasive developmental disorder which, according to the diagnostic criteria listed below, "causes clinically significant impairment in social, occupational, or other important areas of functioning."

These days, many adults who grew up before the inclusion of Asperger syndrome in the diagnostic literature are discovering themselves in articles about the disorder.  Some are seeking a professional diagnosis, but these are tough to come by if you're not in a major metropolitan area.  As a result, many are diagnosing themselves - based not on "clinical" criteria but on quizzes or a simple recognition that the symptoms match their own experience.

Not surprisingly, a large and growing number of adults are recognizing themselves or loved ones as being affected by what Wired Magazine famously called the Geek Syndrome.  They're smart, super-focused, socially awkward, and often quite lonely.  Many have a talent for digital technology, and many are involved with similar pastimes: video and internet gaming, science fiction, and - often - music.

The problem is that self-diagnosis is tough.  Few non-professionals have a clear vision of what "clinically significant impairment" really looks like.  Quite a few don't really know whether or to what degree their language was delayed when they were under three years old.  Thus, while many adults may have the overall symptoms described below to one degree or another, it's hard to determine whether they do, in fact, qualify for an "official" Aspergers diagnosis.

The following criterion are from the DSM-IV:

Asperger's disorder is one of five specific "Pervasive Developmental Disorders" listed:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

  • marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
  • failure to develop peer relationships appropriate to developmental level
  • lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
  • lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

  • encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
  • apparently inflexible adherence to specific, nonfunctional routines or rituals
  • stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
  • persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language e.g., single words used by age two years, communicative phrases used by age three years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific pervasive developmental disorder or schizophrenia.

Are you a self-diagnosed adult with Asperger syndrome, or do you know someone who has diagnosed him or herself?  How did you determine you were "officially" on the autism spectrum?  What steps have you taken to act on your self-diagnosis?   Add your story to the About.com site!

For more information about Aspergers diagnosis and resources, explore this article and its associated links.


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Comments
January 2, 2010 at 9:20 am
(1) Jedi-J says:

My self diagnosis and eventual diagnosis came about through a series of life changing events. I was completely oblivious to my behavior until I began the process of divorce and throwing myself out there as a single person again. It was during this process that others blatantly pointed out all my “defects” and then the discovery that I sounded exactly like a friends profile on My Space who had AS. At the time I was being heavily medicated for ADHD (which I didn’t have and still do not have mind you). Before reading that profile I thought Autism was Rain Man. I had no clue I was on the spectrum. I was going through life as a hermit and loner. I was 35 when all of this took place. I am now 37 and have read over a dozen books on Asperger’s Syndrome. I agree that getting a diagnosis as an adult is extremely hard. I am now seeing a second doctor seeking a second diagnosis. He’s not completely convinced yet…says I am an “avoidant” but I do not fit the criteria for that other than I avoid social interaction at all costs. Seeing a doctor for a mere 2 hours as opposed to a lifetime of walking in my own shoes makes me fully aware that I am indeed an Aspie!!! I fit the criteria nearly perfectly. I am confident my new doctor will come around soon enough the evidence is overwhelming. I could go on and on about adults falling through the cracks like I did all these years but I’ll save it for another time. Good luck to all seeking a diagnosis.

January 2, 2010 at 10:47 am
(2) MJ says:

“As a result, many are diagnosing themselves – based not on “clinical” criteria but on quizzes or a simple recognition that the symptoms match their own experience.”

And then proceed to claim to speak for everyone who has autism and come up with wonderful ideas like rejecting any attempts to cure autism.

How many members of ASAN and the ND movements do you think fit this pattern? From my experience, it would be the majority – or at least a highly vocal minority.

How many board members of ASAN started off by “self-diagnosing” themselves? And yet this organization claims to speak for all people with autism.

I think the prior comment sums up very nicely the problem of self-diagnosis. Just from what he wrote, he has convinced himself that he has autism and is actively trying to convince a doctor that this is the case.

I am not saying that he doesn’t have a form of autism …

BUT

How could a someone like him, with the life experiences he is describing, speak to the needs of a child who has autism?

I think this is primary source of contention in the autism world – this disconnect between those who have decided for themselves that they fit this so-called geek syndrome and the rest, mainly children, who struggle to overcome the very profound disability that is autism.

January 2, 2010 at 2:11 pm
(3) gina says:

“I think the prior comment sums up very nicely the problem of self-diagnosis. Just from what he wrote, he has convinced himself that he has autism and is actively trying to convince a doctor that this is the case.”

Actually, I can tell you that the previous poster did not show a problem. He showed a real-life experience of self-diagnosis. The contention is because of the different ways AS can appear in a person. Plus, it is an invisible disorder. Even after a diagnosis is made, it is an uphill battle. Many family members don’t “believe” in AS and wind up blaming Aspies for a variety of different things. I speak as a spouse of an Aspie who can’t even speak with his own mother anymore because of the emotional distance he put between himself and her due to her pushing him to do things he didn’t want to do (sports, etc) and talking him out of pursuing his special interest as a career. I liken it to someone putting an Aspie in a cardboard box with tape. For years, they stay in that box and reinforce the walls. When I met my husband, I had to break down those walls. Someone with my husband’s life experiences can show people what they need to be sensitive of in a child and how to proceed from there. And, while Jedi-J may not be able to actually speak to anyone about what would have helped him as a child, people like me, their support system can.

January 2, 2010 at 2:13 pm
(4) barbaraj says:

My sister lost her husband, the father of her children at a young age, she remarried a colonel in the US Army. His brother, a general, likely helped him along the way with his “appointment”. When you call the house, he says, colonel ***** here, that’s as social as it gets, there is no way of gaining a conversation, he only knows facts, and a lot of them, he has extensive collections of tin soldiers upstairs, and piles of oriental rugs floor to ceiling in the basement. He’s never had a kind word for anyone, a critical one,or an expressed opinion based on social criteria. I’m suspecting somewhere along the line he can play war games. I’ve never seen eye contact that I would consider normal or social, yet take a conversation to war and he won’t stop talking. He’s a library of war history and the strategies used. I believe he’s in his position because he is this walking bank of what has worked in the past, and what has failed. It’s creepy to think someone’s son could be under his command because they would literally be the “tin soldiers” in his games. He follows rules to the letter, no waivering, no questioning. I would “guess” he’s aspergers.

January 2, 2010 at 4:48 pm
(5) EKSwitaj says:

@JM Please to be giving actual stats and evidence or STFU. Those of us in the neurodiversity movement do struggle: to overcome the prejudices and preconceptions of people like you.

January 2, 2010 at 5:26 pm
(6) Alan says:

The DSM IV diagnostic criteria are rather old now and arguably outdated. Don’t forget that the best quizzes on the internet, e.g. the “AQ test” by Simon Baron-Cohen, is based on diagnostic criteria and written by a professional who understands the condition.

If you have followed some videos on Youtube you will see how some people with AS have taken to moaning about “false aspies”. My opinion, do not be so hung up on the “professional diagnosis” thing because that’s not all it’s cracked up to be anyway. We can be certain many people have been misdiagnosed with Aspergers. I have been told about an example where parents wanted their child to have the Asperger label rather than a personality disorder one, because it’s nicer – and they were diagnosed (misdiagnosed?!) with AS. Because of the hidden nature of the condition, the only thing for certain is there are potentially millions worldwide with Aspergers that have never been diagnosed and probably never will be. Those who aren’t diagnosed and detected are no doubt those who have either less difficulties than others, or have adapted well to the Neurotypical world. Why be so quick to shoot someone down who identifies with the condition as if they really do have difficulties in day-to-day life consistent with the condition enough to make them think they have it, there’s a reasonable chance they do have the condition!?!

January 3, 2010 at 8:52 am
(7) Jedi-J says:

I just wanted to clarify that I already have a diagnosis of Asperger Syndrome. I am now seeing a different doctor due to medical coverage changes and to be honest I didn’t like my previous doctor as she tried to give me antipsychotic medications!

April 23, 2011 at 12:03 am
(8) Victoria says:

Where do you go to get an accurate diagnosis for AS. A psychologist/psychiatrist or a neurologist?

January 3, 2010 at 9:14 am
(9) barbaraj says:

Jedi-J, sounds like you make good choices. This is the part I don’t understand. I guess there are levels of aspergers? It seems so many follow the rules laid out for them,yet you didn’t. Maybe the few I know aren’t representative at all?

January 3, 2010 at 9:26 am
(10) Nat Ryder says:

I wish to God that I don’t have Asperger’s Syndrome but the painful memories of my childhood experience of feeling totally out of place in my school, the feeling of wanting to die as a teenager and a sub-concious (I can’t remember because I suffer a concussion as a result) attempt at suicide as an adult, all as a result of my inability to understand and interact socially with other people and my wife made me curious with what’s wrong with me, and then I found out that I had all the symptoms of AS. No consolation, but I wish I knew it earlier.

January 3, 2010 at 9:28 am
(11) MJ says:

@EKSwitaj – playing the prejudice card? Really? What did you do, look that up in the standard book of plays? He disagrees with self-diagnosis, therefore he has to be prejudiced? I have three daughters with autism, I am not prejudiced – expect possibly against stupidity.

How about this one, the actions of the ND movement are directly harming my children’s future because you create false and misleading impression of what the majority of children with autism are going to be capable of. Your movement gives the impression that people with autism are always highly intelligent and socially “quirky”. And while this may be true for the highest functioning, this is definitely not true for the majority.

You have a site talking about poetry and fiction – my children do not have the communication skills to vocalize even express simple thoughts, such as saying “I am cold” when they are outside in the snow. I hope that way day they will get to that point, but if they do, it will be in-spite of their autism, not because of it.

In fact, it is the movement that you are defending that is prejudiced. It is prejudiced against the majority of the autism population that is not extremely high functioning.

But go ahead, prove me wrong. Point out the people with Rett’s or CDD in the ND movement. Point out the non-verbal people with autism on the board of ASAN. Point out the non-college educated people living in group homes. Then we can talk about prejudice.

In the meantime I suggest you stop claiming that everyone who disagrees with you is prejudiced, that line gets very tiresome.

@Alan – Autism is a medical condition. If you don’t think having a professional diagnosis is important, then we are clearly not talking about the same autism.

January 3, 2010 at 10:32 am
(12) Harold L Doherty says:

MJ

Thank you for introducing a reality check into this discussion. Someone who is self diagnosed as having an Autism Spectrum Disorder is someone who does not have an ASD diagnosis.

In most North American jurisdictions one must be either an MD (usually a pediatrician) or a Clinical Psychologist to make an ASD diagnosis whether that diagnosis is Autistic Disorder, PDD-NOS or Aspergers Disorder. A person who claimed in a judicial proceeding that they had an Autism Spectrum Disorder diagnosis based solely on a self diagnosis would not have that diagnosis accepted by a court of law. The court of common sense should be no different on this point.

January 20, 2011 at 3:31 am
(13) Hannah says:

And yet in a court of law, if one did make this claim, they’d be given the chance to be evaluated by a clinician that is ACTUALLY FAMILIAR with the disorder, instead of one with the vaguest of ideas.
And would all of them get a positive diagnosis? No, of course not, but SOME WOULD, if not many.

The “court of common sense” as you call it doesn’t provide the same resources. Not to mention that just like a real court room, BOTH sides put a spin on facts to suit their case.

January 3, 2010 at 11:42 am
(14) gina says:

@MJ — Thank you for showing your true intentions behind your remarks. While I am sympathetic to your situation, you are acting as if some people, that may be higher functioning than your child(ren), are not worth the same effort at understanding than someone you deem worthy, simply because of your emotional attachment to them. That is just plain WRONG! It IS people like you who breed prejudice against anyone on the SPECTRUM.

January 20, 2011 at 3:41 am
(15) Hannah says:

Thank you! The struggles of higher functioning aren’t harder or easier, just different. One might argue that the stereotype set by people with nonverbal autism puts an unfair image on higher functioning ones as well, but neither viewpoint is fair. Someone who has NO verbal skills faces all sorts of things. However, if you look as though you should know better and should behave properly, but for the life of you can’t, then people think everything you do is on purpose. Low expectations of others is horrible, as is being accused CHOOSING not to reach the expectations that are set too high. It’s great to fight for your kids, but a lioness that attacks her own pride ends up alone. Don’t we need all of the allies we can get?

January 3, 2010 at 12:02 pm
(16) autism says:

Hi folks. Just a plea for fewer personal attacks on this thread… fine to express your perspective, but please don’t express it in the form of flame.

Lisa

January 3, 2010 at 12:11 pm
(17) autism says:

Harold, you say “In most North American jurisdictions one must be either an MD (usually a pediatrician) or a Clinical Psychologist to make an ASD diagnosis whether that diagnosis is Autistic Disorder, PDD-NOS or Aspergers Disorder.”

While you may be legally correct relative to how a judge in a court would respond to a claim of an ASD (I’m not 100% sure of that either way), you’re actually incorrect relative to diagnoses in the US.

The most recent CDC info (the big 1:100 announcement) was based on all sorts of diagnoses, including “administrative” diagnoses – and did not distinguish between diagnoses provided by MDs and other medical professionals versus anyone else:

“Elevated public concern, continued increases in the number of children receiving services for ASDs, and reports of higher-than-expected ASD prevalence highlight the need for systematic public health monitoring of ASDs (23). For this reason, in 2000, CDC organized the Autism and Developmental Disabilities Monitoring (ADDM) Network to provide a better understanding of the prevalence, population characteristics, and public health impact of ASDs and other developmental disabilities in the United States (4,23). The ADDM Network employs a multisite, multiple-source, records-based surveillance methodology to conduct detailed retrospective screening and review of behavioral data from multiple education and health facilities. Administrative records of children who have been evaluated for a range of developmental conditions are reviewed, and standard criteria for case identification and confirmation are applied at each of the surveillance sites (1,24).”

My guess is that this very loose oversight of actual diagnoses explains why 40% (!!) of those kids who HAD ASD diagnoses no longer have those diagnoses. I mean – 40%!!!???

The other reality is that for adults who are not in major metropolitan areas it is very tough indeed to find a qualified expert to diagnose an ASD. Thus people do self-diagnose. Whether that’s a good thing or a bad thing, I think it’s very human: we as a species tend to look for explanations, and in the case of adults with painful difficulties in social communications and sensory functioning, AS seems like a reasonable explanation.

Lisa

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Lisa

January 3, 2010 at 1:47 pm
(18) Jedi-J says:

@Barbaraj the most important thing to remember about people with AS is that it is not a cookie cutter disorder. None of us are identical which is why I suspect those who do not have it have a hard time grasping the concept.

January 3, 2010 at 4:10 pm
(19) MJ says:

@gina – Good use of caps and personal attacks, but where exactly did I say that higher functioning individuals are “not worth the same effort at understanding”? If you think I said it, please quote the exact sentence where you believe I said so. If you are unable to do so, I think you should retract your statements.

If you are going to put words in my mouth, at least make is sound like something close to what I said.

January 20, 2011 at 3:47 am
(20) Hannah says:

Are you seriously expecting to be properly understood on a site about autism? Perhaps it’s because people here DO have autism? I got the same impression that they did. If felt like an attack/rant… which I’m probably guilty of as well, but anyway.

January 3, 2010 at 4:17 pm
(21) MJ says:

Lisa,

Where in the recent CDC numbers did you see an “administrative” diagnoses used? The survey includes data from administrative sources that was not always cross referenced with medical records to link back to an actual diagnosis but that is not the same thing as an administrative diagnosis.

I am not sure how common it is for a child to have a label of autism in a school district when they in fact did not have a medical diagnosis of autism but I guess it could be possible. I know, at least in my area, no school distinct is willing to diagnose something like autism. Rather the school districts will always refer the child to a professional for evaluation.

I believe that Harold is correct – the normal case is for a diagnosis to be made by an MD or psychologist. A parent who is asserting an autism diagnosis for the child from some other source normally will not qualify for services nor will insurance pay for it.

Also, where in the CDC’s numbers did you see a 40% loss of diagnosis? Perhaps you are confusing this with the NSCH survey?

As for whether self-diagnosis, I think this is a very bad idea. In my mind, this is comparable to people who are a little down in the dumps and go around telling people that they have depression. If you have ever lived with someone with depression you will know the difference. With autism it is the same thing – just because you are a “geek” or socially awkward does not mean you have autism nor should you go around telling people that you do.

And in both cases, self diagnosis does a great disservice to those who actually have the condition because it has the tendency to minimize the problems that those who actually have the condition. If you look at autism, you can see this exact thing happening.

It is my opinion, but I believe your implication that it is acceptable for people to self diagnose themselves with major mental disorders is irresponsible. If a person feels they have a problem as severe as autism, they should seek proper medical treatment.

January 3, 2010 at 4:31 pm
(22) Alan says:

One important point is that self-administered questionnaires are regularly used by Psychologists in research and diagnosis as tools. For example the Beck Depression Inventory (BDI) and the Minnesota Multi-Phasic Personality Inventory (MMPI).

Also, unfortunately there will never be a wholly objective test of whether someone does have Asperger Syndrome or not. Professionals can get it wrong, also people asked for details and information may respond based on an understanding of Aspergers giving a stronger impression someone has the condition than those who don’t know the first thing about it.

January 3, 2010 at 5:55 pm
(23) Wynneth says:

I would be careful in the description of “stereotyped and repetitive motor mannerisms”, because these can be far more subtle than what is described here and can include obsessive fingernail biting and other more “socially accepted” behaviors. Many people who have Asperger’s have successful careers until they ceiling out at some point because although they are smart they can’t overcome the subtle social differences they exhibit. For example, I work with the government and have rose to a GS-12 level. I don’t think I’ll go farther because my frankness and unusual way of thinking has never been well accepted by managers. I work with GS-13 scientists who are deep introverts and clearly have Asperger’s also although because they are men, it is manifested differently.

January 3, 2010 at 8:13 pm
(24) autism says:

MJ, you’re right: I mixed up the two surveys. Apologies.

Lisa

January 3, 2010 at 8:25 pm
(25) autism says:

I really don’t have a strong feeling about whether it’s “right” or “wrong” to self-diagnose with Asperger syndrome.

I’d be concerned if people were self-diagnosing and then self-medicating or getting involved with risky treatment protocols. And I’d be concerned if there were a “proper medical treatment” available but underutilized. Or if people who were self-diagnosing because of borderline symptoms were somehow taking away resources from people who need them.

But my strong impression is that people who are self-diagnosing are finding that they have a great deal in common with others in the AS community, and are learning of resources such as support groups and psychologists who are able to help manage anxieties, social/communciations issues, sensory issues, and so forth.

No one can be “absolute” about AS, and even medical professionals may disagree as to whether a diagnosis is most appropriately AS, social anxiety, ADD, ADHD, non-verbal learning disorder, etc. There are certainly distinctions among these disorders, but the lines are quite blurry. Meanwhile, there are certainly people who are “legitimately” diagnosed with AS who are very high functioning indeed – including those with Ph.D.’s, successful marriages, book contracts, and so forth.

Again, as I’ve said before, the autism spectrum is just far, far too broad. Obviously, people DO have AS, they ARE high functioning – and in today’s world they are also considered to be part of the autism spectrum. If I had my way, they would NOT be part of the autism spectrum, simply because the confusion is too great.

Lisa

January 3, 2010 at 11:20 pm
(26) MJ says:

Lisa,

Ok, fair enough. Let me just point out a few things you may be overlooking. You say that you would be concerned if people who were self diagnosing are taking away services from people who need them.

I think this is happening. Look at those, such as ASAN, who attempt to control how research dollars are spent for autism. They have publicly stated that they don’t want autism to be cured.

This is directly changing the future treatments that would be available for other, more severely impacted people with autism.

Second, you talk about people who self diagnosis finding a sense of community. That would be all well and good if autism were a social community or possibly some other sort of common social thread.

Autism is not some sort of social club – it is a medical disorder. People should not be diagnosing themselves in order to join the club.

Finally, I would ask you what other mental disorder you feel it would be appropriate for people to label themselves with? Depression, ADHD, ID, Schizophrenia, perhaps some other condition?

(and please, no one come back with homosexuality, that gets very old)

I am going to go out on a limb and suggest that you aren’t going to be able to find another one where you think it would be appropriate – and I would have to ask why you feel that autism is somehow different from other conditions.

January 4, 2010 at 7:28 am
(27) autism says:

MJ, Asperger syndrome isn’t schizophrenia, or major depression, or any other major mental illness. It’s a collection of symptoms which can create significant issues for the sufferer – but it is not mental illness. What that means, in part, is that getting on the right medication is not a key to success – but finding help, support and direction can be.

In that sense, I’d say that AS has more in common with non-verbal learning disorder, social anxiety or ADHD than it has with a major mental illness. And yes, people do self-diagnosis with those issues as adults – and yes, it can help to find a community of people who have similar issues and have found solutions.

There is no need to join ASAN or to take political action as a result of self-diagnosis with AS. There is no need to get involved with the cultural or financial wars connected with autism. And without the medical diagnosis, people who are self-diagnosed don’t have access to financial or medical supports that would take away from anyone in greater need.

Of course, in the best scenario, a person would go to a professional with experience in diagnosing adults and have that diagnosis paid for through insurance. And specific treatments would be available for adults with AS that are easily accessible and paid for. But the reality is that those services are rarely available.

I don’t think there’s a moral imperative to seek out a professional diagnosis for Asperger syndrome.

I do see, though, that self-diagnosis can skew the numbers when one looks at AS as a part of the autism spectrum. If every self-diagnosed individual is counted as a part of a growing epidemic, our numbers are skewed indeed. Thus I’d say there should be an expectation that those who are building statistical models should include a “who diagnosed you” criterion when doing their counts. In fact, I think it’s absurd to count every individual on the spectrum as “autistic,” when the differences among individuals is so vast.

Lisa

January 4, 2010 at 8:26 am
(28) Jedi-J says:

@Lisa “What that means, in part, is that getting on the right medication is not a key to success – but finding help, support and direction can be.”

I think this is somewhat true. Medications are important to me at least as I have lots of anxiety and depression. But just as equally important is someone to give me direction and purpose. Without someone to point the way I’m generally clueless and oblivious.

January 4, 2010 at 8:44 am
(29) autism says:

Jedi, I’m a bit confused. If you’re self-diagnosed, how is it that you’re on medications? I’m assuming that you must have received the diagnoses you mention (anxiety and depression) from an MD who is able to prescribe your medications?

Lisa

January 4, 2010 at 8:58 am
(30) Jedi-J says:

@Lisa I’m sorry, let me tell my entire story in brief. I was originally medicated for ADHD, Depression, Sleeping Disorder, etc for seven years. In 2007 I got divorced and relocated. During this relocation process it was noted by others that I did not fit into the ADHD profile so I began looking into other possibilities and I remembered that profile on My Space about AS so I began reading up on it and realized it was totally me. By February of 2008 I had my first official diagnosis (this is from the doctor that wanted me to take anti-psychotic meds). Fast forward to October of 2009…began seeing a new doctor and he prescribes me my current meds. Hope that fills in the blanks. :)

January 4, 2010 at 1:53 pm
(31) Color Me Sunny says:

My older brother was diagnosed by a Psychologist whose Ph.D work was on AS. He was in his 40′s, but he is also a rather text-book case.
I have “self-diagnosed,” but I have not pursued getting an official diagnosis, because I don’t see any value for me. I have no intention of filing for disability and there are no treatments for which to qualify.
The primary value for me was that I now understand the source of some of my difficulties and why strategies that work for most people often don’t work for me. This has allowed me to focus my attention on finding strategies that -will- help me to compensate.

MJ, you have my sympathy. All of the recent attention on Asperger syndrome and the recent decision to remove it as a separate diagnosis and lump it in as an Autism spectrum disorder has had an unfortunate impact on the support available for those with “traditional” autism.
I don’t know anyone with AS (formally or self diagnosed) who would think of speaking for those with traditional autism, but the unfortunate fact is that many support groups and educational seminars on autism are now being dominated by topics more specific to Aspergers.

January 4, 2010 at 6:16 pm
(32) MJ says:

Lisa,

My mistake, I assumed that when a condition was defined in the “The Diagnostic and Statistical Manual of Mental Disorders”, it would be safe to call it a mental illness. Perhaps you would be more comfortable calling it a disorder than rather than an illness?

If you don’t believe that autism is a disorder, then we really are not talking about the same thing, are we? And if that is the case, I would strongly suggest that you change the name of your bog to avoid confusing people who are looking for information about the medical condition autism.

As for the other conditions you mention, all of them are (with the possible exception of social anxiety) defined by the DSM and should be diagnosed by a professional. This is especially true for conditions like ADHD which can be controlled by medication.

If you are an adult who thinks they have ADHD, you should seek help, because it is available.

By more importantly, if you decide to label yourself as having a mental disorder without seeking a professional opinion, you really have no business putting your experiences out there as representative of the condition nor attempting to tell other people how to think about the condition.

Which is exactly what organizations like ASAN and loose ideological organizations like ND attempt to do. If you look at the board members of ASAN, you will find people who initially diagnosed themselves. You will also see that almost all of them have at least one degree if not more. If you look at the ND movement, you will find many members who say that they are autistic and criticize people for not accepting their view of autism.

I am sure you know exactly what I am talking about.

I don’t see any evidence that self diagnosis is skewing the numbers of people with autism, except possibly in the adult population. All of the recent data that I have seen for the under 18 crowd has been careful to only include people with autism – not people who decide to say they have autism.

January 4, 2010 at 6:29 pm
(33) autism says:

MJ, in this case I’m in agreement with NIH description and discussion of autism spectrum disorders:

“Autism (sometimes called “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs).

Autism is characterized by three distinctive behaviors. Autistic children have difficulties with social interaction, display problems with verbal and nonverbal communication, and exhibit repetitive behaviors or narrow, obsessive interests. These behaviors can range in impact from mild to disabling. Autism varies widely in its severity and symptoms and may go unrecognized, especially in mildly affected children or when more debilitating handicaps mask it. Scientists aren’t certain what causes autism, but it’s likely that both genetics and environment play a role.

There is no cure for autism. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better.”

Obviously autism is a disorder. But the breadth of severity is extreme. And autism is a developmental disorder as distinct from a mental illness. I think that distinction is important, because the experience and treatment of mental illness is quite different from the experience and treatment of a developmental disorder.

I have no agenda relative to ASAN. On a personal level, I agree with some of their persectives and disagree with others. Self diagnosis and joining ASAN (or even sharing their beliefs) are NOT synonymous.

I think it would be great to simply go out and seek professional diagnoses and help for AS, and certainly think it’s a fine thing to do when appropriate experienced professionals are available. But I wouldn’t suggest that someone travel thousands of miles to find someone with such experience just to confirm a self-diagnosis — unless that someone felt that the trip was financially and personally worthwhile.

Lisa

January 4, 2010 at 10:27 pm
(34) Heidi says:

Hi. I just want to say as of about last year or year before I started learning more about Asperger Syndrome and have a feeling I have it but I don’t have health insurance (I live in southern NJ near Atlantic City). In Dec 2008 I was let go due to work performance at a special education school (I was a one to one aide there) and worked there 2 1/2 years too. I have always been asexual and have always rocked back and forth and side to side (still do). I have very few friends and never had a bf. I’ve always had very few friends and always pretty much was a loner still am that way too. Depression is another problem I’ve had but never been diagnosed with. Also have problems paying attention but never been diagnosed with ADD but when I was a kid I was very hyper and my mom had to put me on a diet (like no/low sugar, red dye, caffeine, etc.)…Also I have reading comprehension problems (had classes for this too) and have problems comprehending in general too. Have a hard time when people say a joke..most of the time it takes me a while or not at all to get it. I am 36 years old and am an only child. Still live w/my mom. I feel I am not good with anything really except maybe computers. I did make it thru a two year college with a degree in Liberal Arts Secondary/Elementary Education but I may change it to a PC degree. Also I mumble (always had and still do) and my handwriting is horrible. My mom says it looks like chicken scratch..always had this too and have tried to improve it but hasn’t happened. My eye hand co-ordination is off too most of the time. Like I’m a clutz. Anyway if anyone knows of a free place where I can get tested for me (that has no health insurance) please let me know. I do not drive (never have) so can’t go far at all. Thanks.

January 5, 2010 at 8:04 am
(35) Jedi-J says:

@Heidi you are in luck thanks to the world being a small place! I am also in Southern New Jersey (Upper Township). The majority of things you described are the same things I still deal with today and I am 37. I am not positive but I suspect you can try Cape Counseling in Cape May Courthouse as that’s where I go. I don’t think they will turn you away due to lack of insurance…it’s worth a try.

January 6, 2010 at 1:22 am
(36) Heidi says:

Hi Jedi. I was living in CMCH too but now I’m in Atlantic County. I prefer to stay within the county since I don’t drive. Thanks for trying though.
Also forgot to mention that I have a very hard time looking at people in the eye for a long time (usually it’s very short time) and I always had this problem too.

May 14, 2010 at 6:06 pm
(37) Ettina says:

One thing I’d like to point out is that having autistic loved ones (or being autistic yourself) doesn’t prove you aren’t prejudiced. Not pointing fingers at any particular person, but just look at all the homophobic parents of gay kids to see my point.
One note: Neurodiversity’s opposition to a cure does *not* mean wanting kids to suffer with inability to communicate. It means working with autism, not against it, to help the individual live well. One thing that really makes me mad is how much work is wasted teaching autistic kids to do things like stop stimming, make eye contact or say please and thank you, when those same kids could greatly benefit from learning how to say they’re hungry or dress themselves.

January 20, 2011 at 3:26 am
(38) Hannah says:

Self-diagnosis is sometimes the only tool availiable. If someone has communication problems severe enough to be on the spectrum (and remember, spectrums have a gradient!) then how are they supposed to communicate with someone what they experience?

Sixty years ago, people who were dyslexic were simply called slow or stupid. How are they supposed to know that what they experience is different until given insight into the reading of a “normal” person?

Are dyslexics complaining about older adult self-diagnosing.

Autistics tend to see the world in black and white, so if they believe that you’re not autistic until a doctor says so, then chances are they won’t believe someone who hasn’t gotten a formal diagnosis, even if the other person has it more severely than they do! Does this mean that it’s true?

Instead of bickering, can’t we just embrace eachother within our own community, even if some of us aren’t truly autistic? Here are people who have at least a vague idea of what it’s like, and they want to be a part with us.

We aspies and autos get enough exclusion from NTs. Please can we not do the same to eachother?

(BTW, I’m only ever this clear and calm in print. Try to have a verbal conversation with me, and you’d never believe it’s the same person)

March 11, 2011 at 11:33 am
(39) JT says:

What is the name of the syndrome where utterly unqualified people diagnose themselves or others as having ADD, ADHD, and/or Asperger Syndrome?

June 16, 2011 at 3:12 pm
(40) TU says:

I know I have this affliction now. I am on a lower end of the spectrum for some parts, higher on other parts and non existent on some parts.

I cannot even read all the comments becasue it is too much for me.

I resonate with Jedi’s comment i read.

I alwasy felt different from others growing up, as a fe,ale, I was never interested in shopping, girl stuff and am hweterosexual completely, but did not relate to women until now in my 50′s i do..I always laughed and said I was a late bloomer! I was emotionally retarded most of my life.

I became an alcoholic and now am in recovery to see and deal with the fact that I have Aspbergers. I know I do..I can self diagnos. I dont need a Doctors aprroval or diagnosis to tell me how I feel or think or how I am.

I am working on accepting myself. I always felt like I was from another planet when I was a kid. I never fit in.

Being a female, and growing up in a family that was in the entertainment world, with many social engagements, it was a learned behavior to fit in, but I have a very hard time with eye contact to this day.

Thank you for letting me share.

July 15, 2011 at 3:59 pm
(41) Chris says:

I always knew that there was something *different* about me. The child psychologists that I spent every Friday with basically couldn’t figure it out. I heard about Aspergers and decided “Yea, that makes sense for some things”, but after taking the tests on http://homepage.mac.com/lpetrich/Asperger/Index.html and having some scores that were WAY above the normal range, I decided that that was what has been different about me all this time and it makes perfect sense, from when I was a child to as I am now as a 20yr old (ALMOST 21!).

September 1, 2011 at 9:15 am
(42) Ettina says:

Well, I did a study of the accuracy of self-diagnosis here:

http://abnormaldiversity.blogspot.com/2011/08/accuracy-of-autism-self-diagnosis.html

Out of a very large sample of people who posted their results on a number of online tests for autism (including one cognitive test), there was no significant difference in the scores of self-diagnosed versus officially diagnosed people.

September 1, 2011 at 9:25 am
(43) Ettina says:

“But go ahead, prove me wrong. Point out the people with Rett’s or CDD in the ND movement. Point out the non-verbal people with autism on the board of ASAN. Point out the non-college educated people living in group homes. Then we can talk about prejudice.”

Well, RettDevil/Kassiane has high functioning Rett Syndrome, and she’s a neurodiversity advocate. Her blog seems to be gone now, but you can find stuff about her if you google her handle.

But I’m guessing you meant low functioning. Amanda Baggs (ballastexistenz.wordpress.com) needs a great deal of assistance with self-care and types to communicate because she is unable to speak. And she does not want her autism cured. (She doesn’t live in a group home, though, because she’s gotten the support she needs to live in her own home with caregivers coming in. A lot of people seem to think living in a group home or institution is purely about functioning level when there’s a whole lot more that goes into it.)

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