Aspergers?

Parents Forum
21

<p>Son has mild Asperger's. He was diagnosed in 4th grade. He does not fit every box on the "checklist" but I believe the diagnosis is correct.</p>

<p>He is exceedingly empathetic-or maybe it's not empathy-maybe it's soft heartedness. It sort of fits with Asperger's because he can't stand for someone to be treated unfairly. He sticks up for everyone because it is not logical for someone to be treated differently because they are overweight, clumsy, unattractive, etc.</p>

<p>As for math and science....most Aspies may excel at those skills, but they still have their parents' genes. Husband and I are quite math impaired - he is better at math than us, but he is still his parents' child.</p>

22

<p>jessiehl, not all aspie's are "little geniuses". Many also have numerous learning difficulties. Yes, they may know every lyric of every song sung by their favorite artist but that doesn't mean they comprehend the lyrics the way others do. Not all are good at math. I personally have been a part of one young Aspie's life for many years. Math and science are extremely difficult for him. His penmanship is terrible--similar to that of a 6 or 7 year old. His drawings ability is similar to that of a 2nd or 3rd grader. One of his favorite interests is Star Wars (everything you ever wanted to know about it) but is surely is not capable of becoming an astrophysicist. He graduated from high school in June and did so by sheer memorization of facts. If you were to give him the same exams today, he wouldn't have a clue how to answer them. He can memorize and imitate characters on TV but I honestly don't think he understands what the script means. </p>

<p>To describe the characteristics of Asperger's, one must understand that there is a very wide spectrum. Similar in many respects but different in many other respects. Mild to severe. Gifted to average to below average. Some focus on Star Wars, some focus of music, some focus math, some focus on plastic action figures, some focus art whether they have the talent or not---it's completely a broad and wide spectrum.</p>

<p>He also shows empathy but not so much to the people in his peer group. It's more towards the elderly, his immediate family, and the very young. He also gets upset if he thinks that someone isn't being treated fairly. Think of it as living in a black and white world without seeing or understanding the many shades of grey that exist.</p>

23

<p>Seeing a neuropsychologist was very helpful for one DS.</p>

<p>Much of your initial description fits him. He has been taking the "PACE" program, </p>

<p>Processing</a> Skills, (look especially at the "Our History" page),</p>

<p>and we've noticed significant improvements in organization and grades.</p>

24

<p>I'd also like to concur with goaliedad's comments about empathy. DS mentioned in #23 is perhaps our most empathetic, or maybe compassionate, soft-hearted as missypie suggested, yet he is often quite at sea in social situations.</p>

25

<p>Even before his diagnosis, we always said that Son had a "weird brain." He could recite almost entire pages of *Harry Potter *by memory, but couldn't learn his multiplication tables. How can a person hear a stand-up routine once and be able to recite it almost verbatim, but then "6 x 9" stumps him every time? (He did learn his math facts eventually but only after his diagnosis. With the Special Ed classification, Son - who also had a "Gifted" label - was able to go into the Special Ed math lab, where he finally learned the math facts.)</p>

26

<p>Another driver behind "spectrum" disorders is the pharmaceutical industry. Spectrum disorders promote off label uses of psychotropic medications, expanding the market many fold. Drug companies get fined for talking to doctors about this, but it still works if they can get us, or patients to talk to each other.</p>

27

<p>I'll agree that Big Pharma does play a role in medicalizing developmental disorders. Treating the symptoms of a behavioral pattern as a psychiatric/psychological (both pharma and counseling) issue is often the back door used by people with psych insurance to get the social system support lacking for people with developmental disabilities.</p>

<p>Unfortunately, for the recipients of the benefits, they are quite limited. Really, how much behavioral training (how to get along in a work environment, etc.) is going to happen with 1 hour a week (if you've got good insurance, perhaps every other week otherwise) in the counselor's office (we've had the experience) or using drugs to limit inappropriate (i.e. odd) behavior and for that matter other normal behavior (we are there as well). </p>

<p>And while the pharma and counseling can work on other issues (depression, bi-polar, even ADHD) that may compound the behavioral issues resulting from the developmental disorder (autism), there really is no substitute for a lot of regular (day-in/day-out) help from social workers, assisted living facilities, and school support staff (i.e. ABA administered by a trained aid) over a lifetime (autism is never really cured).</p>

<p>So while we as a society battle over who is going to pay for helping these people contribute to society (health insurance vs. government social benefits), so many of these people with developmental issues have their lives and potential wasted and become burdens to other productive people in society (somebody has to care for them) keeping them from realizing their potential as well.</p>

<p>Sigh.</p>

28

<p>Excellent!</p>

29

<p>For the "experts"...what difference will it make if the OP finds a "label" for her D? What is so wrong with being an average intellect, emphathetic, attractive but somewhat shy, gawky (the comment about standing up straight I think I heard a thousand times when I was a teen) teen age girl who isn't "great at math or writing" who receives As, Bs and sometimes Cs but not in the most rigrous classes. That probably describes at least 20% of the girls that I knew way back when. They all grew up to be attractive, employed women who managed to go to college, get married, produce children and live very productive lives. I ask, what difference does it make if we label someone who appears to the an untrained eye like mine as a perfectly well within the normal range of the bell curve? I'm absurdly fascinated by this. A drug or a diagnostic label is going to make this young woman into a verbally outgoing, math and writing AP whiz, great postured go-getter? Really?</p>

30

<p>Nothing is wrong with being an average intellect, emphathetic, attractive but somewhat shy, gawky teenaged girl.</p>

<p>But if there is something going on with the D, if she has something that is out of the ordinary, that inhibits or prevents her growth or that makes her vulnerable when vulnerability is not desired, then I think that it is incumbent upon her parents to get a good diagnosis. (Who wants to hear from an adult child, "You KNEW something was not right and you didn't do anything to help me? You let me suffer, when I could have had help in dealing with this?")</p>

<p>Off the top of my head, a diagnosis does several things: </p>

<ul>
<li><p>it provides a handy handle to help explain the one with the diagnosis to others who have to deal with her -- teachers, for example</p></li>
<li><p>it provides a way to look for help, to network with other parents dealing with kids who also have the diagnosis, to assist the child</p></li>
<li><p>if there are other conditions that often occur with the diagnosed condition, parents can be on the lookout for them so as to get early intervention</p></li>
<li><p>for getting, if needed, an IEP, which provides certain protections and accommodations to the child </p></li>
<li><p>for protections and accommodations in the workplace if needed</p></li>
<li><p>AND, to get treatment, for if insurance is to pay for it, a diagnosis will be necessary</p></li>
</ul>

31

<p>
[quote]
some of the "Aspies" I've met seem to be pathologized geeks more than anything

[/quote]
</p>

<p>My Aspie S is in his third yr of college, studying engineering (what a surprise); he would probably be considered by some to be a "pathologized geek." Which, I guess, is a good thing (other than, perhaps, the "pathologized" part ;) ), given how far HE has come and how much HE has changed since HIS early childhood. It's all kind of relative (both figuratively and genetically in our case). Amazing what early intervention, education and family support can do! He was diagnosed before he was 5 (a rarity back in the late 80s when it was not even an official diagnosis yet) and was able to receive help in social skills development as well as sensory integration therapy, at a time when it perhaps made the most difference. Would he be the same person had he not received early intervention? I am convinced he would not. Fortunately, he is now definitely much closer to "reaching his potential" but is he "cured"?? Good lord, no!!! :)</p>

<p>To Momofthreeboys: the label can do many things; it provides a starting point on how to help these individuals; it can provide comfort/relief and an explanation to parents and individuals who have been struggling with dealing with a child who is "different" and does not "fit in"; sadly, sometimes it takes a label before others will look beyond the behavior and recognize that the child is not bad and is not responsible for his behaviro, but that there is an underlying neurological reason for the behavior. Imagine the self-esteem and loneliness of a child who grows up being told he is bad and always feels different and misunderstood, that something is "wrong" with him, and without any friends? As many Aspies say, they feel like an alien from another planet. Individuals with autism/Asperger's have high rates of depression, anxiety and other emotional issues, but the more we study them, the more we see that they CAN be helped, especially if we begin at an early age.</p>

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<p>I agree. A diagnosis can also help the person be more self aware and build greater self esteem. A person can go from "I'm a loser because I don't have any friends" to "I'm wired a bit differently, so social situations will be a challenge." It can also help plan a career path....customer service jobs are not going to be the road to happiness.</p>

<p>Oh, also, if they ever reinstate the draft, I'm going to send Son with his diagnosis. I know that some Aspies have had success in the military, but Son would be the type who would either be in the brig (for not getting that the order shouted to whole group applied to him) or would be a danger to himself or others (e.g. standing when everyone else was crouching.)</p>

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<p>momofthreeboy--The difference is that she will soon be at an age where she will need to have some independence and learn to function and be a productive part of society outside of her parent's home. A new and updated evaluation may provide a diagnosis that will not only help her and those around her to understand the behaviors but also provide direction for a plan of action for future behavioral, psychological, and educational resources. </p>

<p>For some students, the NYIT program (I posted the link in a previous post) is used as a bridge---helping immature LD students crossover into adulthood. Some use it as a "pre-college" experience because it teaches the organizational skills, social skills, and sense of independence that these kids often lack. Depending on their abilities and skills, some go on to attend college. Others choose to enter the workforce. The point is that no matter what direction this girl is leaning, there should be a plan in place to help her reach her full potential. </p>

<p>The OP is loving a mom and wants to help her daughter. We're merely offering our suggestions which are often times based on personal experience. I think everyone on CC wants to see every child live up to their potential and live a happy life.</p>

34

<p>goaliedad: I'm aware (I was a neural & cog sci major as an undergrad).</p>

<p>nysmile: Not all are "little geniuses" for sure, but they are disproportionately likely to have enhanced pattern recognition skills, which often correlates with strong mathematical ability.</p>

<p>I'm probably going to bow out of this discussion now, because issues related to autism and diagnostic standards and labeling push a <em>lot</em> of hot buttons for me (as I said, I grew up with an autistic twin - "high-functioning" by '80s standards, probably "severe" or something by today's), and I have a lot of very strong opinions about it, and if I don't bow out I may end up saying something more heated/harsh than I should to somebody.</p>

35

<p>I didn't mean to offend, jessiehl, just to express a bit of dismay at your seemingly cynical reply in this thread. </p>

<p>I can also understand your discomfort with diagnosis and lableing, as yes developmental disabilities are a very grayscale thing both in presentation and measurement.</p>

<p>And yes, science is not very well served by the relatively unsophisticated methods we use to test and label these conditions. I think though that you would agree that we probably don't have enough data about how the "normal" brain is supposed to function, as "normal" has plenty of variation. I've seen presentations of various scans of certain parts of the brain of "normal" and autistic brains when presented with similar information. There are always more questions as to whether these are the only differences and how much of a difference is necessary to present the behavior associated with this type of diagnosis.</p>

<p>And no, I have no formal education in the field or any field related, so you probably have far more expertise than I can ever lend to the conversation. You probably have enough background in the field to understand the issues involved better than any of us and it sounds like you have the experience to be cynical about the whole industry. </p>

<p>And if I can take a guess (could be wrong), I would suspect that you are of the opinion that many people take a diagnosis as an excuse to explain away otherwise modifyable behavior. Perhaps there are some who will take this "easy road" out of personal development or even professionals who are stumped and give this as an easy (but hard to treat) diagnosis. By and large though, people with social development issues do want to get along well, but usually lack enough of the skills to move forward. If a diagnosis is helpful in getting them appropriate support services (not just pharma and weekly counseling), I guess it is a small price to pay for the other sins.</p>

<p>No harm intended.</p>

36

<p>jessiehl, I didn't mean to offend. I can understand why this topic is very emotional to you. </p>

<p>to OP--the link below is an outline of the post-HS program that I mentioned on a different thread. It may be helpful for other parents struggling with post-HS plans for their LD children.</p>

<p>NYIT</a> :: Vocational Independence Program (VIP) CURRICULUM: Academics</p>

<p>The program is well rounded in both life skills, social skills, emotional needs, and academics. Definitely not cheap--tuition/room/board just over $42,000/yr (similar to many private college costs).</p>

37

<p>Now that I've gotten the ranting out of my system venting to friends...</p>

<p>
[quote]
I didn't mean to offend, jessiehl, just to express a bit of dismay at your seemingly cynical reply in this thread.

[/quote]
</p>

<p>No worries, and you're right, it <em>was</em> cynical. :)</p>

<p>
[quote]
And if I can take a guess (could be wrong), I would suspect that you are of the opinion that many people take a diagnosis as an excuse to explain away otherwise modifyable behavior.

[/quote]
</p>

<p>It does happen (I've known of cases where parents refuse to discipline their children pretty much at all on the grounds that they are autistic and can't help it...they aren't doing those kids, autistic or not, any favors), but it's not quite what I meant (and it's an argument I am careful about, because it tends to get used to bash mentally ill people, including some of my dear friends).</p>

<p>My problems are more with the implications of lumping more and more people under the same umbrella. I feel that it's trivialized the problems of some <em>very</em> disordered people in public perception, e.g "I know someone on the spectrum, and he graduated from college and lives on his own and has a white-collar job, so how much of a problem can it be?" Perhaps even more, I think it does harm to cure efforts, from a political perspective, because a lot of mild Aspies are saying, understandably, that they are just different, not disordered, and see cure-related research as an attempt to wipe them out. Well, I understand why they feel threatened, but when I was growing up we knew families where the autistic kids had to be kept in muzzles or straitjackets to stop them from tearing themselves apart.</p>

<p>I have a knee-jerk reaction to the phrase "on the spectrum" because it makes things into a false binary (similar to the false binary that the "spectrum" phrase was supposed to get out of people's heads) - "on the spectrum" vs. "neurotypical". There is no binary. There is a spectrum, and <em>everyone</em> is on it, and the question is where you need to be on it in order to be considered disordered. I feel like that point has been shifting to include more and more of the population, possibly in response to the fact that getting a diagnosis of <em>something</em> is often the only way in our system to ensure that a kid's individual needs are considered (which I also have a problem with). Hence my cynicism about it.</p>

<p>And now I have seriously thread-jacked. Back on topic. OP, IQ tests usually measure different areas of intelligence - sub-intelligences, if you will - in addition to giving you an overall number. Do you know if your daughter's IQ tests show any particular areas of strength? A known area of strength could translate into training potential for a particular vocation, or possibly even a particular college major at a college with good disability services.</p>

38

<p>Sounds like AS to me, a lot of times girls with aspergers are easily able to copy the actions of other girls and kids while males with aspergers syndrome are not able to do so and have more social skills. Girls are hard to diagnose because of this but it has been proven more often that girls will be immature and naive but will be able to copy the social skills of their peers and mentors.</p>

39

<p>I'd suggest you get a good neuropsychological evaluation (or at the very least one to review the previous evals) who is knowledgeable in Aspergers and NonVerbal Learning Disabilities(NLD) (as menloparkmom suggested). From what you have posted, thats what it sounds like to me as well-- NLD. There is a lot on the web to read about NLD. You might want to start there.</p>

40

<p>Asperger is a clinical diagnosis. There is not a specific test or number or whatever and physicians including child psychiatrists and developmental pediatricians regularly make the diagnosis, as do psychologists and neuropsychologists. The most important part of the assesment is to understand the individual's capacity for 'theory of mind' and social imagination. Associated difficulties with central coherence (seeing patterns and predictability in situations) and executive functions also warrant understanding.</p>

<p>Asperger is itself a spectrum- from mild to severe. The children who have the most trouble are those with lower IQ but mostly those with explosive emotional responses. Adolescents who have never been understood can be depressed and highly anxious.</p>

<p>Dr. Tony Attwood from Australia describes these children as very, very 'kind.' Being kind is not the same thing as having theory of mind, which is much more akin to empathy on a cognitive level.</p>

<p>There are lots of programs at the university level for students with Asperger.(college living experience) Spending a year working on life and social skills prior to academics can be useful for many....</p>

<p>Why diagnose? Because the central angst of teenagers surrounds the question 'who am I?' Because there has been a lifetime of misattribution? Because it is a step to getting the most specifically appropriate support (as opposed to generic interventions)? </p>

<p>Not all kids who have these attributes have all the attributes. Not all experience difficulties which are severe enough to warrant a diagnosis. Everyone deserves understanding.</p>