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Just realizing ds is Aspie -- can you tell me where to begin?


Alicia64
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DH has Aspergers and I'm just realizing that one of my twins does too. He's 10. It's showing itself in that: he gets bullied a lot, acts inappropriately in social settings and drives his twin crazy.

 

I want ds to learn appropriate social skills for his own sake, but also for the sake of his twin brother who is getting very frustrated and angry. My aspie son blames his twin A LOT for every fight, everything that goes wrong It's hard on his twin.

 

Where do I start to find counseling or classes or services? I don't know where to start.

 

Thank you,

 

Alley

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I would get a workup from a psychologist or developmental pediatrician. The forum has threads about finding a good one and one that works well for you. Be forewarned: the DSM has recent changes that were very controversial surrounding Asperger's and autism.

 

We did not have a full neuropsych workup for my son with Asperger's, but we a few key pieces, such as IQ, Woodcock Johnson (achievement), a broad screening for speech and hearing (better than the pediatrician screening), filled out a billion rating scales, lots of discussion with the psychologist, etc. We continue to see her for help figuring out how to respond and help him grow. He's a sweet boy, but he's intense. Our psychologist specializes in working with twice exceptional kids (gifted plus a learning issue), and she has a lot of Aspies that she works with. We found out about her through a local gifted program that our kids attend.

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I would get a workup from a psychologist or developmental pediatrician. The forum has threads about finding a good one and one that works well for you. Be forewarned: the DSM has recent changes that were very controversial surrounding Asperger's and autism.

 

We did not have a full neuropsych workup for my son with Asperger's, but we a few key pieces, such as IQ, Woodcock Johnson (achievement), a broad screening for speech and hearing (better than the pediatrician screening), filled out a billion rating scales, lots of discussion with the psychologist, etc. We continue to see her for help figuring out how to respond and help him grow. He's a sweet boy, but he's intense. Our psychologist specializes in working with twice exceptional kids (gifted plus a learning issue), and she has a lot of Aspies that she works with. We found out about her through a local gifted program that our kids attend.

 

I don't mean this rudely at all, but why do I need a formal diagnosis? I've lived w/ DH for 24 years. I know a ton about Aspergers.

 

My DH is afraid that an actual diagnosis could hamper his future in some way. Maybe getting a diagnosis is the first step. . .?

 

Again, no rudeness meant!

 

Alley

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I don't mean this rudely at all, but why do I need a formal diagnosis? I've lived w/ DH for 24 years. I know a ton about Aspergers.

 

My DH is afraid that an actual diagnosis could hamper his future in some way. Maybe getting a diagnosis is the first step. . .?

 

Again, no rudeness meant!

 

Alley

Did your dh's diagnosis hamper his future? He sounds very successful, so I am not sure why he is concerned with your ds receiving the same diagnosis.

My DH is an Aspie. He makes six figures in computers.

 

Fwiw, I doubt you would be able to gain access to services at all without a formal diagnosis. Counseling, yes. But, counseling by itself offers limited help. Group therapy with social skills practice is a little different.

 

Fwiw, socially awkward and some inappropriate behaviors is a long way from an Aspie diagnosis. I would seek a diagnosis before you classify him with something he may not have.

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Did your dh's diagnosis hamper his future? He sounds very successful, so I am not sure why he is concerned with your ds receiving the same diagnosis.

Fwiw, I doubt you would be able to gain access to services at all without a formal diagnosis. Counseling, yes. But, counseling by itself offers limited help. Group therapy with social skills practice is a little different.

 

Fwiw, socially awkward and some inappropriate behaviors is a long way from an Aspie diagnosis. I would seek a diagnosis before you classify him with something he may not have.

 

My DH didn't have a diagnosis. After years of frustration I started to read and read and read. It's pretty obvious in my DH's case. I'm not at all saying my DH is correct in the whole "hampers" thing. Not at all. I'm just trying to figure out how to proceed and be respectful of my DH's wishes at the same time.

 

How do I go about finding the social skills classes. Where would I start?

 

Alley

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Our therapists' office offers social skills classes.  Usually they will want to see a patient and work with them to prepare them for the class as it is often a mixed aged social setting.  I may be incorrect, but I don't think the social skills class is something you can just 'sign up' to attend.  There are online resources, books, etc. for teaching social skills.  If you google social skills curricula you will find plenty. 

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My DH didn't have a diagnosis. After years of frustration I started to read and read and read. It's pretty obvious in my DH's case. I'm not at all saying my DH is correct in the whole "hampers" thing. Not at all. I'm just trying to figure out how to proceed and be respectful of my DH's wishes at the same time.

 

How do I go about finding the social skills classes. Where would I start?

 

Alley

I am going to go off on a rant bc it really does a disservice to post about the success of your dh in a thread about Aspies when you have self-diagnosed your dh as an Aspie. I wondered when I read your post in that thread whether it was an actual diagnosis and you have now verified my suspicions.

 

Why am I ranting? Bc there are literally 1000s of people out there who think that having Asperger's is just some sort of quirky behavior that is not really disabling and then when other people who know the self-diagnosed Aspies believe that they now understand all about Asperger's encounter people like my ds who are really disabled by the disorder, they are incredibly dismissive. I can't tell you how many times we have been told is that all he needs to do is find his passion and everything will be fine. Or things like look at Bill Gates....having Asperger's is not a real disability.

 

Well, actually it is. Being quirky and socially awkward is not Asperger's. I have raised my ds for 22 yrs and have read umpteen books on the subject, have been to dozens of specialists with him, have spent a small fortune trying to help him and you know what claim I would never make????

 

That I know a ton about Asperger's, so why do I need a diagnosis. Bc, after everything we have been through, I still don't know how to help my ds. We still fail every single day. I feel like the only thing I know about Asperger's is that it can make life very, very difficult for the people suffering through it.

 

If you think your ds really has Asperger's, please seek a neuropsy evaluation and seek interventions. The earlier they receive certain types of therapy, the more likely the success. Bc Asperger's can be disabling and really limit their futures. Forget about the label. It does it all by itself.

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I am going to go off on a rant bc it really does a disservice to post about the success of your dh in a thread about Aspies when you have self-diagnosed your dh as an Aspie. I wondered when I read your post in that thread whether it was an actual diagnosis and you have now verified my suspicions.

 

Why am I ranting? Bc there are literally 1000s of people out there who think that having Asperger's is just some sort of quirky behavior that is not really disabling and then when other people who know the self-diagnosed Aspies believe that they now understand all about Asperger's encounter people like my ds who are really disabled by the disorder, they are incredibly dismissive. I can't tell you how many times we have been told is that all he needs to do is find his passion and everything will be fine. Or things like look at Bill Gates....having Asperger's is not a real disability.

 

Well, actually it is. Being quirky and socially awkward is not Asperger's. I have raised my ds for 22 yrs and have read umpteen books on the subject, have been to dozens of specialists with him, have spent a small fortune trying to help him and you know what claim I would never make????

 

That I know a ton about Asperger's, so why do I need a diagnosis. Bc, after everything we have been through, I still don't know how to help my ds. We still fail every single day. I feel like the only thing I know about Asperger's is that it can make life very, very difficult for the people suffering through it.

 

If you think your ds really has Asperger's, please seek a neuropsy evaluation done and seek interventions. The earlier they receive certain types of therapy, the more likely the success. Bc Asperger's can be disabling and really limit their futures. Forget about the label. It does it all by itself.

 

When I posted in the other thread I really didn't mean to come across as bragging. I was just trying to give that mom hope. The last 24 years have been extremely frustrating and difficult and I'm letting myself feel somewhat pleased that life seems to be getting better with DH.

 

And figuring out about four years ago that my DH has Aspergers helped me beyond what words could say. Before I realized that he had Aspergers. . . I was just so mad at him and at a complete loss for how he was acting. I felt very alone in the world. People looked at me very funny that I was even with DH. I can't tell you how many times friends carefully asked me why I was with him.

 

I'm not sure how to proceed. I'm just very wary of the therapy profession and the turn our government is taking these days. I know that makes me sound paranoid. If other parents feel great with their therapist -- that's fantastic. But I don't want to rush into anything. I'm not terribly trusting of the therapeutic world. (I wasted a lot of time and money w/ therapists years ago who also looked at DH funny. They didn't really know about Aspergers back then.)

 

Anyway, I didn't mean to upset you or say something offensive. I'm just lost and don't want to rush in. I've done that way too many times in the past.

 

Alley

 

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When I posted in the other thread I really didn't mean to come across as bragging. I was just trying to give that mom hope. The last 24 years have been extremely frustrating and difficult and I'm letting myself feel somewhat pleased that life seems to be getting better with DH.

 

And figuring out about four years ago that my DH has Aspergers helped me beyond what words could say. Before I realized that he had Aspergers. . . I was just so mad at him and at a complete loss for how he was acting. I felt very alone in the world. People looked at me very funny that I was even with DH. I can't tell you how many times friends carefully asked me why I was with him.

 

I'm not sure how to proceed. I'm just very wary of the therapy profession and the turn our government is taking these days. I know that makes me sound paranoid. If other parents feel great with their therapist -- that's fantastic. But I don't want to rush into anything. I'm not terribly trusting of the therapeutic world. (I wasted a lot of time and money w/ therapists years ago who also looked at DH funny. They didn't really know about Aspergers back then.)

 

Anyway, I didn't mean to upset you or say something offensive. I'm just lost and don't want to rush in. I've done that way too many times in the past.

 

Alley

 

 

You don't know your dh is an Aspie.  Sorry.   You don't.   You are making assumptions.l

 

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You don't know your dh is an Aspie.  Sorry.   You don't.   You are making assumptions.l

 

 

Instead of arguing with me. . . can you tell me where to start? When I look online in my community I see a lot of autism services, but nothing specifically for Aspergers. Should I just contact the autism providers and see what they say or where they'll send me?

 

Alley

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Instead of arguing with me. . . can you tell me where to start? When I look online in my community I see a lot of autism services, but nothing specifically for Aspergers. Should I just contact the autism providers and see what they say or where they'll send me?

 

Alley

 

Multiple people have told you.  Including me.   You need to start with a neuropsy evaluation.  That is where you start.  

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Multiple people have told you.  Including me.   You need to start with a neuropsy evaluation.  That is where you start.  

 

Well, that gave me something to Google. I hadn't heard of a neuropsy eval. before.

 

I'm not at all sure why I offended you. I just shared my experience.

 

Thanks,

 

Alley

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Why would you want a formal diagnosis? Well Aspergers is a neurological condition. Just like any other medical condition you need to know if that is what you are dealing with before you start treating it that way. If you suspected your child had any medical condition would your first step not be to take those concerns to your doctor and go from there? Really your best first step is to talk with your doctor.

 

I agree that you will have a very tough time accessing services without a dx. Any of the reputable social skills program in our area have a long waiting list and they generally don't take kids without a dx.

 

Also while the social diffuclties can be very apparent at 10, many parents who aleady have a dx of Aspergers find themselves lulled into a false sense of security about the child's overall development. They think things will be okay, "little johnny just needs a bit of social skills help", but really Aspergers/HFA is so much more complex then that. If your child does indeed have Aspergers these are critical years to make in roads with executive functioning issues he has, I would not want to leave that to chance. Those executive functioning issue have a huge determination on your child's ability to lead an independent life.

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It is offensive for someone to first issue a diagnosis of those around him or her and then plan to begin treatment without any actual formal training in doing so because even with formal training the diagnosis is very difficult to make.  Many of us have spent years seeking help, getting treatment and still do not have the outcomes we would wish to see.  Maybe you are some kind of uber-genius that can handle it all on your own, but it is a little presumptuous to assert that your DH "has" a condition.  You may suspect that he has the condition, but the fact is he has not been diagnosed and when offering advice to others (as on other threads) that fact should be made VERY clear. 

 

Aspergers is a part of the autism spectrum and thus austism treatment would be the sources to investigate.  For a child, a child psychologist or the child's pediatrician would be the appropriate starting point.  For an adult, he would see psychiatrist or psychologist who would offer additional resources or referrals.  If you've been researching this for years and know "tons" how is it you know nothing about finding appropriate treatment providers?  Either you know it all or you need help. If you need help my first recommendation would to not tell the professional you eventually see that you already know your family members have the condition and know tons about it.  :glare:

 

 

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It is offensive for someone to first issue a diagnosis of those around him or her and then plan to begin treatment without any actual formal training in doing so because even with formal training the diagnosis is very difficult to make.  Many of us have spent years seeking help, getting treatment and still do not have the outcomes we would wish to see.  Maybe you are some kind of uber-genius that can handle it all on your own, but it is a little presumptuous to assert that your DH "has" a condition.  You may suspect that he has the condition, but the fact is he has not been diagnosed and when offering advice to others (as on other threads) that fact should be made VERY clear. 

 

Aspergers is a part of the autism spectrum and thus austism treatment would be the sources to investigate.  For a child, a child psychologist or the child's pediatrician would be the appropriate starting point.  For an adult, he would see psychiatrist or psychologist who would offer additional resources or referrals.  If you've been researching this for years and know "tons" how is it you know nothing about finding appropriate treatment providers?  Either you know it all or you need help. If you need help my first recommendation would to not tell the professional you eventually see that you already know your family members have the condition and know tons about it.  :glare:

 

Lesson learned. I'm really sorry. I did not mean to be offensive.

 

I actually called DH -- he's traveling -- and talked to him about an eval. He's more open than he ever has been in the past.

 

What I don't understand is why the offended people here don't take more of a "we need to educate you" tact, rather than being angry. Not everyone is going to agree with how to handle this set of circumstances. I didn't know that there a "right way" to do this.

 

My mistake.

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FWIW, I've had my suspicions about quirks and tendancies in our family and a recent evaluation has brought to light for me that while some of the aspects I have been seeing are the same as Aspergers, the underlying issues are different (or at least that is where we are right now in things).  With the new information from an evaluation, you may also see that while the issues you are facing may be the same on the surface, the underlying cause may be different and therefore the actual degree of the problem and issues behind the problem may need different handling.

 

 

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What I don't understand is why the offended people here don't take more of a "we need to educate you" tact, rather than being angry. Not everyone is going to agree with how to handle this set of circumstances. I didn't know that there a "right way" to do this.

 

My mistake.

Probably bc when you asked and someone responded with the steps to take, seek an evaluation, your response was that you had all the diagnostic answers so why did you need an evaluation.

 

I have no idea what you mean by not everyone is going to agree with how to handle this set of circumstances. You see some unusual behaviors. You don't know the cause or any underlying factors. No one can give you any suggestions until you actually know what you are dealing with. It would be like walking into a drs office and asking for a prescription for a complicated medical diagnosis before you see the dr, except a 1000 fold more complicated bc the testing methods aren't draw blood, take a culture, or run some other test. The evaluations take hours. (At least they should. Any reputable psy should give multiple psy tests. It isn't as if diagnosis comes from only a parental survey.....if it does, run the other direction.). Then they need to consider are there comorbid issues, should there be drug trials, what types of therapy/s.

 

The fact that you posted the questions the way you did.....like you can just walk in somewhere and sign up for what you think you want.......shows a serious deficit in understanding autism spectrum disorders and how they are diagnosed and treatment plans.

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FWIW, I've had my suspicions about quirks and tendancies in our family and a recent evaluation has brought to light for me that while some of the aspects I have been seeing are the same as Aspergers, the underlying issues are different (or at least that is where we are right now in things). With the new information from an evaluation, you may also see that while the issues you are facing may be the same on the surface, the underlying cause may be different and therefore the actual degree of the problem and issues behind the problem may need different handling.

I have two friends who have recently had similar outcomes to evaluations they entered into thinking they might see an autism spectrum diagnosis. Both have sons who demonstrate many characteristics that are common with autism, and both had the evaluations done based on the recommendation of professionals who work with autistic kids all the time and who thought these boys were potential candidates for an autism diagnosis. In both cases, the results of the evaluations ruled out autism spectrum. The kids still have issues, they still need IEPs and other interventions, but they did not meet the criteria for an autism spectrum disorder. There just is no way for a lay person or even an experienced professional to diagnose autism without a thorough evaluation.

 

Of course, there is a good chance that books and resources addressing autistic disorders would also be useful to someone dealing with a person not on the spectrum but who shares some characteristics of spectrum disorders.

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The others are right.  You need to see a neuropsychologist first.  You can find one here: http://www.theaacn.org

 

The defensiveness/anger/weird-vibe-you-are-getting comes from years of people misunderstanding our Autistic family members.  It is frustrating to have a constant stream of advice thrust at you from people who have "read a lot," or "once met a kid," or "used to be like that myself until my dad got strict."  We have heard it all, and we know that there is no book or method out there that will help your child more than an evaluation.  Autism varies widely, has lots of co-morbid issues, and is extremely misunderstood by the general public.  

 

If you truly believe that Autism (Aspergers no longer exists as a diagnosis) is a possibility, then it is important to get those evaluations.  It will be expensive and it will take for.ev.er, but the information is invaluable.  The results will be confusing, so don't worry if you don't understand all of the numbers and letters, they will walk you through all of it and give you a list of professionals to see next.  Treatment takes years, and there are no quick fixes.  Here is a quick list of some of the options that might be available depending on your child's diagnosis: http://www.autismspeaks.org/what-autism/treatment

 

Starting the process is very intimidating, especially if you already have a distrust of the system.  It requires you to admit to yourself that something is truly wrong, and put your child's needs above your own fears, money issues, and time constraints.  Hugs - I've been there, it wasn't easy, but I can say with confidence that I am very glad that I took that frightening first step.  

 

 

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Lesson learned. I'm really sorry. I did not mean to be offensive.

 

I actually called DH -- he's traveling -- and talked to him about an eval. He's more open than he ever has been in the past.

 

What I don't understand is why the offended people here don't take more of a "we need to educate you" tact, rather than being angry. Not everyone is going to agree with how to handle this set of circumstances. I didn't know that there a "right way" to do this.

 

My mistake.

I want to say something that's easy to miss in this thread and when you're in the moment.  The people here take the time to respond because they CARE.  If they didn't care, they'd just walk away from the thread.  So whatever you're feeling, know that their responses were meant to HELP you.  Sometimes it takes a little tough love to get someone over to the other side and confront misperceptions and jolt them.

 

Like the others, I'm astonished at your own reticence to get proper evals and to diagnose multiple family members with a SERIOUS diagnosis without learning all the implications (physical, mental, social) and making sure you're correct.  There *are* other labels like adhd that will have a social impairment component to them.  It's not like spectrum is the only label that could fit.  You miss the benefit of being made aware of all the OTHER things going on if you only slap on a label and call it a social problem.  Whatever is going on probably has more components.  Even simple ones, like the possibility of being low tone and having sensory problems, etc. etc. etc. (not an exhaustive list) are important.  Further, what disturbs me most, that doesn't seem to disturb you, is the idea that the dc HIMSELF might like some concrete answers, accurate answers, and that it might be beneficial to him emotionally to get those answers in the arms of a loving mother, not later after years of frustration or when lobbed by a stranger.  Kids who are different know they're different and want to know why.  It seems like you're only thinking of YOUR fears in this.  (your fears of the gov't, etc.)  What about his??  He deserves to know and to know ACCURATELY, not something you just make up and guess.  It's WAY too easy to guess incorrectly.

 

And yeah, I would be totally astonished if any reputable therapist took you in without sending you for evals with an issue as serious as that.  If you want to know a *basic* first step?  Go to the ped and ask for screenings for EF and spectrum.  They have the tools.  They're fallible, but it's a really simple first step if you want one.  While you're there ask the ped to screen for muscle tone issues and check for signs of allergies, including gluten intolerance.  That's a place to start.  The ped takes 2 weeks to get into and the neuropsych will take 1-3 months plus the research time to find him.  So that would be a really basic place to start while you do your research to see who the best neuropsychologist is within say a 4 hour drive.  If you have insurance, you may need the referral from the ped anyway, so then you'll have it.  You can always pay privately the neuropsych and be done with it.  What you do with the results is then your business.

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Btw, just on a more practical level, are you making any changes with how the twins interact?  Maybe they need more space and boundaries?  My dd is low stim (sort of a low energy starting point) and very over-sensitive to sensory, and I'm very high stim (wake up revved, ready to do calculus) and under-sensitive to sensory.  My constant singing and noise that she claims I make (I wouldn't know) bother her IMMENSELY.  Things like that aren't even really so much about fault as serious DIFFERENCES.  Btw, that took OT evals to figure all that out.  Our compromise?  We stay apart.  In your twins' case, they may need more time seriously apart, more boundaries.  If they've been working in the same room, the same floor of the house, the same planet, they may need more explicit ground rules.  You may need to explicitly TELL your ds what the other twin feels and tell him the precise behavior you want to see.  

 

Sorry, you've probably already tried that.  You say he's having trouble is social settings, but it's probably the same deal.  You may need to pre-discuss things or be willing to bend more, considering whatever symptoms he's having.  

 

Well I'm glad you're getting information and good counsel, and I hope you're able to work out full evals soon.  Also consider an OT eval.  You can look at SIPT for a sensory-certified OT. For us it was life-changing or at least game-changing.

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Hi Alicia,

 

You might get some helpful information at the http://www.wrongplanet.net forum.

 

IMO the most you can say right now is that you strongly suspect Asperger's...but then you need to get a professional evaluation done.

 

Just because the DSM folks decided to lump Asperger's into their broader category of Autism Spectrum does not mean that it no longer exists.  Asperger's is unique - it has specific criteria that makes it different than other diagnoses that are part of the spectrum.  Professionals that are worth seeing will still recognize the specifics and call it what it is.  The help that someone with Asperger's needs may be quite different than the help that someone with another diagnosis would need.  Many professionals were opposed to the changes to the DSM.  A good one may have to diagnose according to the new one, but will still be able to discuss the unique combination of things that show up in Asperger's.

 

BTW I was very concerned about getting a neuropsych evaluation done because every place I checked had a waiting list of many months, and it would cost over $2000 - at some places, up to $4000 - and we have no insurance coverage for this at all.  (If you are in the US, and if your insurance is from an employer that is a  private company that self-insures, they fall under a federal law called ERISA - this allows them to specifically exempt all coverage of medical and mental health care that is related to learning disabilities or autism - even in a state that has its own law requiring employers to provide this coverage, a private company that self-insures has a loophole. )  I ended up going to just a child psychologist who has experience with autism, Asperger's, bipolar, nonverbal, ADD/ADHD, ODD, etc. instead of a full-blown neuropsych practice.  If we had needed further evaluation to make an exact diagnosis, we would have been sent on for one, but it turned out that the diagnosis process with him was very textbook and easy, so it wasn't necessary.  It's been confirmed by two other professionals since then, so I'm comfortable that it's correct.  This was much more affordable than going for the full neuropsych.

 

As far as getting help - it's both easier and more difficult than I thought it would be.  More difficult because we have no coverage for diagnosis-specific therapies of any kind, and because we need to be careful about officially assigning any label, since it could cause us to be denied coverage for pretty much all mental health care for him - which is stupid, unfair, discriminatory and totally unethical, so I have no conflicts with working around the system.  Also, our school district does not offer anything that would be worthwhile (I have had multiple therapists who are familiar with what our district offers tell me that it's not good and might make things worse for him to be enrolled, and that what I am doing already is better.)  Easier because I've found that there are occupational therapy clinics that offer social skills help and groups at a cash rate that is not awful, and speech-language therapists who will do the same thing for people who do not have any insurance coverage. So while we chose to not have a diagnosis made "official", I have still been able to find helpful programs for him.  If we ever need a piece of paper with that word on it to get into something, I can always get it, but we are doing okay without it for now.  

 

Good luck to you - please do get some professionals involved - it can make a huge difference.  But for us, it hasn't provided the clear road I had hoped it would.  Our experience is that there is just not any kind of safety net for this.  We have considered moving to a school district with better services, or a change of employment in order to get coverage that doesn't exclude this kind of specific help. 

 

 

 

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The reason (my understanding) for the ASD instead of Aspergers  thing is, that it is more accurate to look at specific areas of strength and weakness, and to recognize that even with some strengths, some weaknesses are real problems, even when they exist alongside strengths. 

 

I am very "in" to the "high functioning or low functioning trap."  This means that -- it is really hard to say that one person is all "high functioning" or another person is all "low functioning."  It just doesn't work that way a lot of the time.  People have strengths and weakness in both places.  People have needs in both places.  There is a danger of someone who is labeled "high functioning" not being perceived as really needing help.  There is a danger of someone labeled "low functioning" as not capable of meeting a challenge.  But that is not just a PC, let's-sound-nice thing.  It is really true. 

 

I think it is very fair and good to group people according to their profiles.  I think that is good to do, it is helpful, it is how you find what works, etc.

 

I do NOT believe that that is done with a label of Aspergers or HFA.  I just don't think they are really clustering people properly.  I think the ASD thing is the response to that. 

 

B/c -- from the diagnostic criteris of Aspergers, there is a wide variation, I think.  I think I have read there are 4 main clusters of people who fit the diagnosis.  Something like that. 

 

And then -- it really does depend on context, what skills will matter.  I know my son has some higher skills in some areas, than other kids, who have vastly higher skills than him, in other areas. 

 

To compare -- a little boy in his class who has much better behavior, has a much smaller vocabulary and is behind him in language.  To compare -- my son is better socially than another kid with really good academic skills.

 

From my book that has my favorite chapter about "the high or low functioning trap" ---- she took her son, to visit a possible school setting, and saw a child who was having a behavior, and was concerned about her son being with "kids like that."  Then she found out that, in many other areas, that child was at a higher level than her son. 

 

My son's ABLLS has 15 different areas. Now -- he has lower language skills, so a lot of these are language areas.  But there are multiple section for different social-type things (what setting, child or adult, structured or not, etc etc) and my understanding is that there are patterns (where a child fits a pattern) but that different kids can have very different skill sets across the social sections.  It is not like -- everyone is stair-stepped, you can say "this is higher or lower."  It is just not how it is. 

 

Anyway -- that is my understanding. 

 

I do also find autistic disorder more helpful for my son, I currently do prefer it to ASD.  I still think it is its own real thing.  I think that about Aspergers, too.  But I think it is pretty well recognized that there is a lot of variation with autistic disorder, I am not sure that there is as much understanding of that with Aspergers (my impressions).  So I am totally fine with people choosing to use Aspergers.  I don't mean that I want people to use ASD, and not Aspergers or autistic disorder or PDD-NOS.  But I don't think it is possible to draw a lot of conclusions, it is just like -- possibilities.  It gets somewhere, but it is not like it is super-specific.  But geez, even dyslexia is like that.  It is helpful, but there is a wide range, too.

 

Sorry, rambling.... overall:  high chance that there are splinter skills.  It can be hard to know just what skills are high and what skills are low.  It is good to know ---- play to strengths, ameliorate weaknesses.... probably a diagnosis is how you will really get the profile of strengths and weaknesses.  I do believe that professionals, who have wide experience of different children, can do it better than a parent with one child and one husband.

 

I also think there "can be" danger in extrapolating too much from one other relative. 

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Laundry, clarify something for me.  You have a psych diagnosing and two other practitioners confirming, but it's not official?  Official as in it's filed with an insurance company?  Official as in...?  I need to understand these hoops a bit.   :)

 

It's in notes, but actually putting a code to it could only cause us to lose coverage for more general mental health issues for him, so we would not even be able to get coverage for help for problems anyone could have, ie anxiety, anger management, depression, etc.  Anything we would "gain access to" with an official diagnosis would only be theoretical, because we would have to pay cash and those are very expensive services.  I already have access to some excellent help without it being official, at a more affordable cash rate.  Everyone who has worked with him has pretty much been seeing the same thing and is on board with this.  There are a lot of kids who need help and are in this situation with lack of coverage. 

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Lots of great feedback so far on this thread.

 

I am a therapist and have worked with a significant number of kids who carry an ASD diagnosis.  I was never comfortable making this diagnosis myself.  If a client presented and I suspected that the child was on the spectrum, I referred out to a local agency which does a thorough evaluation with several different professionals prior to assigning a diagnosis.  However, some kids (and parents)   presented at my office for help with a correct ASD diagnosis already in place so I worked with them on the issues they presented with.  Not all therapists are helpful but many are, so I would encourage you not to throw out the baby with the bathwater. 

 

A good friend sought out a social skills group specifically for her ASD son with similar age kids on the spectrum which was amazingly helpful.  These can be hard to find and expensive, but it truly did benefit him greatly.  She suspected that her dh is on the spectrum, and her son was also exhibiting some of the same symptoms so she asked for an evaluation from a psychologist who had been seeing him individually for several months.  The psychologist did the evaluation with the mindset that his issues were likely not caused by ASD but rather by anxiety and ADHD.  However, after all of the testing, he qualified for a diagnosis of Aspergers.  The psychologist was a bit surprised, so that gives information on how difficult this diagnosis can be.

 

Many ASD kids/adults have comorbid diagnoses, and sometimes these issues respond well to medications.  (ADHD, OCD, Anxiety),  Every child (and adult) I have known with ASD presents a bit differently, and each one has different needs.  Because it is truly a spectrum, it can be mild or severe.  

 

I am one of the mental health professionals who did not agree with removing Aspergers from the DSM.  A psychiatrist I know gave me the insight into the fact that the changes seem to be motivated by many people applying for disability pay for their children who are diagnosed with Aspergers.  I had not heard that, and this is her take on it, but it was interesting to ponder.  Effectively, all of the people diagnosed with Aspergers will either meet criteria for Autism or they will not, making them part of the "normal" population.  Even if one does not get an ASD diagnosis, a thorough evaluation should provide helpful feedback.  Treatment of any type is based on diagnosis, for medical or mental health issues so an evaluation is the first step.

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Wow, about the disability payments.  I had no idea about that. 

 

Also, I did want to say, I would be careful about overgeneralizing that your son might have a lot in common with your husband.  On one  hand, maybe it will go that way.  On the other hand, maybe it won't go that way.  It can really go either way.  So I would be careful about depending *too* much on your husband's insights or on strategies that worked with your husband. 

 

When those insights and strategies are helpful, that is a great blessing.  But they are also two different people, and may not always have things go the same way. 

 

I am glad your husband is a good source of support and first-hand information ----- really I just think, other sources of information can also be good, especially if it doesn't seem like they benefit with the same things.  If it seems like they do ---- not so important. 

 

But I think it is really easy (speaking firsthand) to try to say "well they are relatives" and expect things to work the same and expect some things to be similar.  And also to think "well that didn't work, with so-and-so, so I won't try it again with this child."  Well -- unfortunately, maybe that thing that was such a negative for the other person, will be good. 

 

This is honestly something I did NOT realize for a while. 

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Wow, about the disability payments.  I had no idea about that. 

 

Also, I did want to say, I would be careful about overgeneralizing that your son might have a lot in common with your husband.  On one  hand, maybe it will go that way.  On the other hand, maybe it won't go that way.  It can really go either way.  So I would be careful about depending *too* much on your husband's insights or on strategies that worked with your husband. 

 

When those insights and strategies are helpful, that is a great blessing.  But they are also two different people, and may not always have things go the same way. 

 

I am glad your husband is a good source of support and first-hand information ----- really I just think, other sources of information can also be good, especially if it doesn't seem like they benefit with the same things.  If it seems like they do ---- not so important. 

 

But I think it is really easy (speaking firsthand) to try to say "well they are relatives" and expect things to work the same and expect some things to be similar.  And also to think "well that didn't work, with so-and-so, so I won't try it again with this child."  Well -- unfortunately, maybe that thing that was such a negative for the other person, will be good. 

 

This is honestly something I did NOT realize for a while. 

 

Honestly, this thread has been really helpful to me. And I can't believe DH is open to getting our son an eval. I need to read through this thread more closely before I go forward.

 

DH has Asperger's. He just does. I wish he'd do an eval. DS is different in that a) he homeschools so didn't have to endure the terrible bulling DH did. But also DS seems much more mild. But, again, I'm concerned that the behaviors will increase w/ time -- that's what has happened over the last three years. It was one thing. Then another. Then another. Now I just can't hope "it's a phase."

 

Really. Thank you for helping. I honestly didn't mean to say things in a way that sounded rude.

 

I've figured out where to get an eval. Now I need to make the call.

 

Thanks again,

 

Alley

 

 

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I only read the first few posts, but I wanted to say that not all individuals who come off as having Asperger-ish symptoms actually have the condition. I took my 2nd child for an evaluation by our family's pediatric neurologist after his little sister was diagnosed with High-Functioning Autism. The pediatric neurologist said that she could understand why we were concerned, but she felt very strongly that DS was *NOT* "on the spectrum". She previously worked at the same developmental clinic as the developmental pediatrician who diagnosed youngest DD with HFA, so she is very familiar with ASD.

 

The neurologist felt that DS' symptoms actually were due to a combination of giftedness + ADHD + anxiety. The anxiety makes him slow-to-warm-up and a bit shy. The attention difficulties can lead to missing non-verbal cues and other subtleties necessary for appropriate social interaction. The giftedness can lead to unusual interests and a "little professor" mannerism. But while he has some traits in common with Aspies, there were other things that ruled out Asperger's or PDD.

 

Now we had a subsequent evaluation at a binocular vision clinic that revealed borderline-low visual processing (just slightly too high to qualify for VT through our health insurance unfortunately). So it is possible he may have Non-Verbal Learning Disorder in addition to the ADHD & anxiety. We need to get a full neuropsych eval and were on the waiting list for the Eides for a while but sadly that is not in the budget right now.

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It's in notes, but actually putting a code to it could only cause us to lose coverage for more general mental health issues for him, so we would not even be able to get coverage for help for problems anyone could have, ie anxiety, anger management, depression, etc.  Anything we would "gain access to" with an official diagnosis would only be theoretical, because we would have to pay cash and those are very expensive services.  I already have access to some excellent help without it being official, at a more affordable cash rate.  Everyone who has worked with him has pretty much been seeing the same thing and is on board with this.  There are a lot of kids who need help and are in this situation with lack of coverage. 

Ok, so then they use the words in the writeup but no DSM codes?  My ds' speech eval, for instance, had codes.  I don't recall any codes in my dd's psych write-up.  So where are those codes?  In stuff submitted to insurance?  So then if you pay privately and don't go through insurance there are no codes and no issue?  Even the codes for my ds' speech eval were only on the forms she gave us to submit to insurance if we wanted to put the cost toward our deductible.  We have an extremely high deductible ($10K, the way we like it) so we never bothered to submit.  Therefore, to the insurance company he's probably coded for diddly.  

 

Sorry to be daft here.  I'm just trying to understand how you're saying all this info gets into the hands of so and so.  How does it go with the ped?  On the therapy and evals, we've always been private.  Is stuff I talk with the ped about getting codes that get submitted to the insurance company because the insurance pays for that "free" yearly wellness visit?  Haven't really asked them about that.

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 A psychiatrist I know gave me the insight into the fact that the changes seem to be motivated by many people applying for disability pay for their children who are diagnosed with Aspergers.  I had not heard that, and this is her take on it, but it was interesting to ponder. 

I've read this sentence over and over trying to understand it.  So you're saying people will receive disability payments from the gov't if their kids get a particular label??  So then unscrupulous souls are seeking out light labels and spinning their presentation,  hoping to net $$?  

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Honestly, this thread has been really helpful to me. And I can't believe DH is open to getting our son an eval. I need to read through this thread more closely before I go forward.

 

DH has Asperger's. He just does. I wish he'd do an eval. 

Maybe your dh will get evals with time, like after your ds gets evals.  I've talked with people who've done just an informal eval, 1-2 hours with a psych, bam done, good enough to get some peace.  What's screwy to me about this scenario though is that by definition the aspie should not be noticing that the dc needs evals.  Or maybe YOU are the one who brought them up as necessary?  That's awesome that he's open to them and that you found someone good so quickly.  Do keep us updated, because we'll be happy to hear your progress!   :)

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I've read this sentence over and over trying to understand it.  So you're saying people will receive disability payments from the gov't if their kids get a particular label??  So then unscrupulous souls are seeking out light labels and spinning their presentation,  hoping to net $$?  

This is my understanding of the psychiatrist's take on it.  She is the medical director of the agency I work for, and I do trust her insights.  She likely has access to information that I would not have access to.  It seems a very odd reason to change the DSM, but I am not "in the know" about these things.

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Ok, so then they use the words in the writeup but no DSM codes?  My ds' speech eval, for instance, had codes.  I don't recall any codes in my dd's psych write-up.  So where are those codes?  In stuff submitted to insurance?  So then if you pay privately and don't go through insurance there are no codes and no issue?  Even the codes for my ds' speech eval were only on the forms she gave us to submit to insurance if we wanted to put the cost toward our deductible.  We have an extremely high deductible ($10K, the way we like it) so we never bothered to submit.  Therefore, to the insurance company he's probably coded for diddly.  

 

Sorry to be daft here.  I'm just trying to understand how you're saying all this info gets into the hands of so and so.  How does it go with the ped?  On the therapy and evals, we've always been private.  Is stuff I talk with the ped about getting codes that get submitted to the insurance company because the insurance pays for that "free" yearly wellness visit?  Haven't really asked them about that.

 

The practice is in our network - they checked our benefits and filed for us.  I believe their services went in as "consult for behavioral issues" or something general. 

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I've read this sentence over and over trying to understand it. So you're saying people will receive disability payments from the gov't if their kids get a particular label?? So then unscrupulous souls are seeking out light labels and spinning their presentation, hoping to net $$?

I have heard this as well. That states could not afford to provide services for the number of people receiving diagnoses. I know that ds would qualify for SSI if we took him in to fill the paper work (we just haven't found the time to do it.) He also qualifies for certain services through the state such as those offered through the Dept of Rehabilitative Services which we have utilized.

 

As for the rest of this thread, I need to stop reading it b/c the "I read a book so I know" mentality is going to make me post something I will really regret. FWIW, from all the therapists we have worked with, it is not typical for those on the spectrum to hold highly successful jobs. Some, yes. But, it is most definitely not the norm. A 2 second google search on what percentage of adults with aspergers are unemployed brought up numerous links:

Today, 35 percent of individuals with an autism spectrum disorder are attending college, but it is believed that people with AspergerĂ¢â‚¬â„¢s have a 75-85 percent unemployment rate.

http://www.diversityjournal.com/9929-is-it-time-for-aspergers-in-the-workplace/

Here are some links and stats about people with Asperger's and jobs.

 

From Born on a Blue Day by Daniel Tammet

 

"research in 2001 by the u.k.'s national autistic society indicated that only 12% of those with high-functionoing autism or asperger's syndrome had full-time jobs. in contrast, 49% of people with other disabilities, and 81% of people who are not disabled were in employment"

 

http://www.help4aspergers.com/pb/wp_44644162/wp_44644162.html

 

Approximately one in 100 people are on the autism spectrum. Most have a milder form known as Asperger Syndrome (AS). Although people with AS are usually highly intelligent and gifted it is thought that over 85% are without full-time employment. That is an outrageously high percentage.

 

http://blog.penelopetrunk.com/2009/10/29/aspergers-at-work-why-im-difficult-in-meetings/

 

Eighty percent of adults with Asperger Syndrome do not have full-time work. This not because they canĂ¢â‚¬â„¢t do the work. ItĂ¢â‚¬â„¢s that they canĂ¢â‚¬â„¢t manage to be socially acceptable while they get the work done. Ă¢â‚¬Ëœ

from http://www.wrongplanet.net/postt159958.html

Influences of Aspergers syndrome on employment

Adults with Asperger's may find it difficult finding employment or entering undergraduate or graduate schools because of poor interview skills or a low score on standardized or personality tests. If they do become employed, they may be misunderstood, taken advantage of, paid less than those without Aspergers syndrome, and be subject to bullying and discrimination. Communication deficits may mean people at work have difficulty understanding the person with Aspergers syndrome, and problems with authority figures are common when difficult, tense relations with bosses and supervisors develop. They may focus on details so much and have such a high degree of perfection, that they cannot tolerate any shortcomings in other employees.

 

In some cases, the person may be highly intelligent and not be hampered by problems with socializing issues. Albert Einstein and Bill Gates of Microsoft are two well known examples of adults rumoured to have Asperger's syndrome. However, in other cases these adults can be extremely good at their jobs but do not promoted because they lack the interpersonal skills to be managers - they may be overly perfectionist, demanding and unable to create warm relationships with staff.

 

http://www.autism-help.org/aspergers-syndrome-adults.htm

Our ds has a high IQ. But his deficits due to his Asperger's are disabling to the point that we wonder if he will ever be completely independent. He is employed at Goodwill doing very low level work.....working the floor stocking, neatening, etc. Just being independent would be a thrilling outcome for ds.
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The practice is in our network - they checked our benefits and filed for us.  I believe their services went in as "consult for behavioral issues" or something general. 

So basically it's labeled for the way it goes through insurance.  If it doesn't go through the insurance, not an issue.

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OP-Please get the book, "Homescooling your struggling learner" by Kathy Kuhl.  It's on Amazon.  Get it TODAY.  Read it ASAP.  There is great information on how and why to get testing.

 

Neuropsych testing is NOT psychotherapy.  It is a long process (usually spread over several visits) of tests and questions that will help to diagnose your child's particular disabilities.  There is no reason to be suspicious or afraid of this testing, anymore than you have to worry aqbout blood tests at your doctor. The government has nothing to do with it, so that's not even an issue.

 

Aspergers, autism spectrum, LD, AD/HD, ADD, ODD....these are disabilities that you cannot diagnose by reading books and web forums. 
 

Take your kid to your ped and get the process going NOW. 

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So basically it's labeled for the way it goes through insurance.  If it doesn't go through the insurance, not an issue.

 

Correct.  If we wanted to put him in a program that required something about a diagnosis that was written by a professional, I can get that.  But I have been able to find help that does not require this - it is enough for them to just have a discussion about what we've already done.  And nobody has ever questioned the diagnosis.  

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I've read this sentence over and over trying to understand it.  So you're saying people will receive disability payments from the gov't if their kids get a particular label??  So then unscrupulous souls are seeking out light labels and spinning their presentation,  hoping to net $$?

We recently applied for SSI for my youngest, not for the money (we have too much in savings to qualify for that) but because apparently getting her officially deemed "disabled" by SSI will help with qualifying for other things like the Medicaid waiver. Autism is one of the qualifying conditions for SSI because it's considered a permanent disability.

 

My DD received a diagnosis of "classic" autism (rather than Asperger's or PDD-NOS) under the DSM-IV criteria because of the extent of her impairment. I've looked over the revised DSM-V criteria for ASD and, while she has made a lot of progress over the past two years, she still has enough symptoms in enough areas to qualify.

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8FillTheHeart ---- I do think that there are Aspergers people who are doing well, I think sometimes that there is still a lot of shame with the age group that my cousin (for sure) is part of.  I think that there are just less people publicly saying "yes my relative has Aspergers" and also that they are having a hard time.

 

I think a lot of people in his age group ----- the difficulties are called being lazy or things like that.  They are just personal attacks. 

 

So then -- maybe someone is doing well, married, etc, and their WIFE is the one who is the person speaking, not the MOTHER or COUSIN.  B/c ------ it breaks my heart to say this, but my cousin may be in a sub-group of Aspergers that is never going to get married.  So there is never going to be a WIFE presence for him on the Internet or other forums.  And I think that wives are going to have a different perspective, for one thing.  But just the fact that someone has a wife, I think, put them in a different level.

 

But I think that is still Aspergers.  Just Aspergers with a different set of skills and weaknesses, with the skills overall managing to make up for the weaknesses. 

 

My cousin has a lot going for him, so much, but his weaknesses hit him so hard. 

 

So I have an opinion ------ yes, there really are people with Aspergers who are doing great.  I also think -- there is an over-representation of the people doing well in a lot of areas of discussion and whatever, impressions people have, etc. 

 

But they also have needs.

 

I think it is just ---- a subset, and there are different subsets, all lumped together under Aspergers. 

 

But I do think ---- like, there are resources for helping people with Aspergers with certain sets of problems (long-term relationships, relationships at work) and they are problems we would love my cousin to even have. 

 

But I don't think people know Aspergers can be such a spectrum like that sometimes, with the domains the problems are found in having such an impact, etc. 

 

So with that kind of reasoning ----- I can see saying "oh it is a spectrum" and just having everyone who meets some little criteria be on the spectrum, and then having to give more specific details than the code word of Aspergers..... it does make sense to me.  But I do still think the word Aspergers gives some good information.

 

But also ---- my cousin was diagnosed when he was about 20, and he was in the first wave of anyone to be diagnosed in our part of the country.  There was just no one diagnosing before that, so therefore no one being diagnosed.  I think it means ------ who is getting diagnosed in that older age group, before ANYONE could be identified younger?  And to me the answer is ---- very caring and involved parents, or wives.  And I think a lot of wives are pretty active.  And parents -- I think a lot do not realize that they have an adult child with Aspergers... maybe they tried a lot to figure stuff out back when their kids were 5 or 13, but gave up somewhere, or was told another explanation, where now the explanation would be Aspergers. 

 

Maybe I am misunderstanding -- but I used to feel like -- people really misunderstood Aspergers, if my cousin had Aspergers.  Alternately I wondered if he didn't really have Aspergers.  Now I think -- he has Aspergers and he is really poorly misunderstood b/c people don't know how he can be so good at some things and come across so well, and then be so bad at other thing and so incapable at other things. 

 

I just think -- sometimes it is a different sub-group that people are talking about.  The sub-group of people who have wives.  And so it is implied -- have got many skills for independence and finding a life partner. 

 

No offense to any wives!!!!!!!!!!!! 
 

It is just different to be a wife than a cousin or a parent. 

 

Edit:  And the difference between cousin and parent is huge, too.  I think I function a lot like a sibling for my cousin, he is an only child.  I function like a younger sibling.  My older sisters function like older siblings.  But we don't have the same experience as parents ----- at all. 

 

I know I can butt heads sometimes just from not being a parent, but my aunt and uncle are in their early 70s, my uncle is having health problems, etc, etc, and my two sisters and I are all the family my cousin is going to have.  Well, plus our children and two husbands. 

 

 

 

 

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Our ds has a high IQ. But his deficits due to his Asperger's are disabling to the point that we wonder if he will ever be completely independent. He is employed at Goodwill doing very low level work.....working the floor stocking, neatening, etc. Just being independent would be a thrilling outcome for ds.

{{{hugs}}} I'll be praying for your DS. He's still in his early 20's IIRC, isn't he? It has been my observation that *SOME* young adults with a diagnosis of Asperger's are "late bloomers" and mature quite a bit in their late 20's and early 30's. They still have residual difficulties as a result of their condition but they are much better off at 35 than they were at 25. Think the difference in a NT individual between a 25 y.o. and a 15 y.o.

 

I am hoping that the young kids with Asperger's and HFA today will have better life outcomes than the previous generation has had. I know there are no guarantees, but I pray that all the intensive early intervention and treatments that we are doing with DD will help improve her functioning enough to allow her to live independently, complete a college degree or trade school certificate, hold down a decent job, and so on.

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Oh, I also think, the whole category of people, who realize they or a spouse have characteristics of autism or have Aspergers etc (since it was not a diagnosis given, back when my generation was kids)..... that is also a self-selecting group ---- a group of people who have married, had children, are in a position to meet the needs of their child and research information for their child, etc.

 

I don't think my cousin is part of that self-selecting group. 

 

So ---- that is why I think that my knowing of him, is different than what some other people know, wrt Aspergers.

 

And I think that is fine and everything --- it is just different.

 

Anyway ----- this is a long chain of logic I have ---- not sure if it makes a lot of sense or not.

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8FillTheHeart ---- I do think that there are Aspergers people who are doing well, I think sometimes that there is still a lot of shame with the age group that my cousin (for sure) is part of.

Lecka, I think you misunderstood my post. I do not doubt that there are Aspie's doing well and are married. But, they are definitely not representative of the majority of Aspies. I didn't make up the stats. I simply posted them. Less than 20% of Aspies have full time employment and that doesn't even begin to suggest on par level employment either. I don't have time to dig for stats, but I would guess out of that 20%, a large percentage are under-employed.

 

What really bothers me is diagnosing someone via a book or online survey questionnaire and then declaring definitively that the person they diagnosed has Asperger's. They may suspect or they might think, but, no, they do not know. The vast majority of the time the "I know an Aspie that is a highly successful professional" stories are not clinically diagnosed people but "I read a book/took a survey" diagnosed. Those stories negatively skew understanding of Asperger's bc it is doubtful that most of them actually would be given the diagnosis. It perpetuates the "Aspies are only quirky or socially impaired" stigma. Reality is so much more is going on.

 

Does that mean they don't exist? No. But, nor do as many exist as is stereotyped.

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Possible I am still not getting it....

 

I think that for my and my cousin's age group or generation, the current adults in their 30s and older, ALMOST NO ONE has a formal diagnosis.  That is b/c it is a new diagnosis.  So ---- wanting there to be a formal diagnosis, for this age group, I think is a very high bar.  Also, I think that it is NOT NECESSARY for an adult to have a full, formal diagnosis in many cases ---- having the information may be enough, for the purposes needed.  But I think it is not fair to bar people b/c they lack a formal diagnosis.

 

Now ----- I despise people using Aspergers to mean "quirky" or "introverted."  I do despise that. 

 

I also accept that some people are very wrong about using the label for themselves.  Just wrong.  But I choose to believe ---- that it is also possible for someone to recognize themselves in it.  And I think that is just fine.  I think someone's spouse or parent can recognize someone.  I think sometimes people are wrong ----- but I don't think it is possible to know, how many people are right or wrong.  I just think -- I do prefer to focus on the people who are right, more than on the people who are wrong.  I have not had any real frustrations with people who are wrong, though, in particular. 

 

But again -- for a person who has Aspergers to recognize him or herself in a description ----- that is self-selecting, so people who are likely and able to do that will be overrepresented, people who are not able to will not be represented unless a parent or someone brings it up.

 

And again -- someone whose spouse can spot it, might bring it up to them.  That is more self-selection to people who are married and presumably independent. 

 

Or -- someone who has contacts in the community and is recognized by someone, who brings it up to them (or their parents). 

 

Or -- someone who finds out about their child and then realizes they are also. 

 

I just think ---- almost every one of those circumstances is going to overrepresent that really small proportion. 

 

I just think ----- that is an explanation for the stereotype.

 

I also think it is a bad stereotype. 

 

Well -- I also think, is it better not have a label, or have a label that a lot of people misunderstand?  Well, my cousin was called weird and lazy before, it is not better.

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Lecka, I think you misunderstood my post. I do not doubt that there are Aspie's doing well and are married. But, they are definitely not representative of the majority of Aspies. I didn't make up the stats. I simply posted them. Less than 20% of Aspies have full time employment and that doesn't even begin to suggest on par level employment either. I don't have time to dig for stats, but I would guess out of that 20%, a large percentage are under-employed.

 

What really bothers me is diagnosing someone via a book or online survey questionnaire and then declaring definitively that the person they diagnosed has Asperger's. They may suspect or they might think, but, no, they do not know. The vast majority of the time the "I know an Aspie that is a highly successful professional" stories are not clinically diagnosed people but "I read a book/took a survey" diagnosed. Those stories negatively skew understanding of Asperger's bc it is doubtful that most of them actually would be given the diagnosis. It perpetuates the "Aspies are only quirky or socially impaired" stigma. Reality is so much more is going on.

 

Does that mean they don't exist? No. But, nor do as many exist as is stereotyped.

 

I am sorry that your son is not currently experiencing the life you had envisioned for him. I am extremely grateful you've been transparent about your son's struggles because I have many years to go before I can stop taking a closer look at my son's behavior and not just take it for granted that moving forward is enough progress to make it to our end goal. I hope and pray that my son will be able to live the life we have in mind for him.

 

That said, my son doesn't present with as many difficulties as a lot of other children on the spectrum. He is growing into some traits more fully while also not growing out of other behaviors, but he can pass for neurotypical much of the time. Just as you do not like hearing people say that they've diagnosed someone by reading a book, I cringe when I hear that people dismiss the idea that their child might have a spectrum disorder because they compare their child to someone who is more obviously and stereotypically on the spectrum. We were those parents at first, until we heard a seminar on 2e kids that listed how Asperger's can look in kids with high IQs. My son may or may not have as much trouble functioning in the day-to-day world, but believe me, he struggles profoundly with his difficulties. He knows he is different, but he doesn't understand others. He knows he has problems while having no idea what question to ask or what to do about it. It's terribly hard for him to realize that won't be like others, no matter how hard he tries. (He has been told about his diagnosis, but his level of self-awareness is one reason that we dismissed the idea of this diagnosis at first. However, his self-awareness is very DIFFERENT than the kind most people have.)

 

There are people whose children present with symptoms in late childhood or early teenage years, and the parents had shrugged off "little" red flags all along thinking that they would be dismissed by a psychologist (this happened to me, and it kept us from getting help for a long time). Does that make him these individuals less spectrum-ish somehow? I think Lecka's point about wives vs. parents is important--there are books on Asperger's that bring up her point exactly (Tony Attwood comes to mind). Some people can hold it together in certain environments, and they let it all hang out at home. That's still impairment. My son held it together in school most of the time, but he was a train wreck at home. We found out recently that he was extremely motivated to not get into trouble ("trouble" being a generic word for disruptive, having meltdowns, etc.--he was undiagnosed when he attended school). He was afraid (we now know) that the principal would expel him, and he greatly admired the principal.

 

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