I agree that having a diagnosis is helpful simply because it gives a "name" to what needs to be worked on. It is actually liberating in some ways. I have a 9 yr old who was diagnosed with Asperger's when he was 4. He has an IEP almost entirely for social communication issues: interacting with peers, dealing with rigidity/being flexible, expressing and verbalizing his feelings, behaving appropriately, etc.

DS also has ADHD, combined type, found through a full neuropsych eval, and takes medication for it. Recently, DS told us that he did not think his medication was working - so he has a lot of self awareness about his ASD/ADHD and is able to self advocate.

He is very bright, talented, gets good grades (does not need academic assistance but gets additional help in writing bc the neuropsych diagnosed a LD in written expression in 2nd grade before that caused any problems) and has friends. Has no problem talking to people he does not know.

His public school is very understanding of his issues and quick to tell us about any social/emotional issues that causes problems so we can take immediate action to help him. Overall, the diagnosis has been a win-win with no downside for DS.

School is more than about getting good grades: Everyone needs to know how to behave appropriately and get along with other people. I tell my son that humans are social animals and having friends and interacting appropriately with others is important and makes life fun and enjoyable (and employable). He agrees.

Anonymous wrote:Why in the world would OP's child need SAT accommodations even if he gets an ASD diagnosis? The kid makes straight As. I really wish people would stop assuming that kids with ASD need "help."

I think it's pretty clear that the OP's kid doesn't need academic accommodations. However, many of us, reading that a 13 year old cannot carry on a conversation with people he doesn't know, it gives us pause. Being able to communicate in the most simple ways--purchasing something from a sales clerk, ordering food in a restaurant, asking for help or directions are basic daily life skills.

At 5 or 6, you can say, give a kid time. At 13, a kid needs help if he can't do this. But first you start with the why.

Why in the world would OP's child need SAT accommodations even if he gets an ASD diagnosis? The kid makes straight As. I really wish people would stop assuming that kids with ASD need "help."

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, I'm a mother of an aspie who got a late diagnosis at 16. You do want that diagnosis to get early intervention, including social skills classes, speech (our DC has a speech issue), eye contact, meds, and most importantly, the autism label on school records so you can get an IEP to assist with classroom and homework. High shool is really tough for aspies - it was a tough time but we would have never made it without accommodations. You can later then apply to colleges which have the accommodations you think your son needs. Be prepared to pay for testing every three years. We had to retest before University. And be prepared for a lot of loneliness. That's just the way aspies are. The good news is that DC is going to get a degree. The bad news is that he will probably never drive and may not be employed in the conventional sense, but we are giving him every opportunity that our non-autistic kid has. I wish I had known earlier so I could have received more intervention but testing wasnt' as good as it is now.

Thank you to both PPs. That is helpful.

To this PP, I still don't know yet much about Aspergers (and of course, he may not actually receive that diagnosis.) But if he has Aspergers, he won't necessarily need academic assistance, would he? Or did your son need more assistance as school classes became more complex? It seems to me that my son almost has an unfair advantage at school, rather than disadvantage. That is, our system weighs things like test results so heavily, and he does really well on standardized tests, and tests in general, because he is strong in memory and focus. But as I read your post, I'm wondering if perhaps he will struggle more as he is asked to provide more critical thinking? Not sure.

Does your son actually feel lonely, or does he just appear lonely? That is, my son is generally alone, but he seems to like it that way.

He is actually lonely. He has no friends. It's not a skill that Aspies have. Earlier intervention might have helped us in helping DS develop social skills, tics and other alienating behaviors. School and homework was painful. We tried trendy privates but it was still too much homework. By freshman year, there was justs no way he could keep up so the IEP helped. IEP helped also with extra time on ACT (got a perfect 36). Kid is also in mensa. But the difficulty of growing up not knowing what was wrong with him and getting him early treatment took its toll. I would vote for getting a definite NT test done and fine out and get him the help he needs now.

This is untrue. I'm the adult aspie with several very close friends, and am happily married to a neurotypical spouse. Please rethink your perceptions of autism and read some things written by autistic people, not just what their parents say. Would you rather learn about racial injustice from a person of color or from their white parents?

We have one actual autistic adult posting in this thread and he said what, in my reading experience, they always say--that finding out was somewhere between helpful and transformative. I have never read an account from an Aspie who wishes they had not gotten a diagnosis. It sounds like your son is very capable (my 9yo is too) but in the longer run it may be very helpful to him to selectively disclose these issues. People are vastly more sympathetic when they understand a little better, particularly since some Aspergers traits can be mistaken for character flaws. And our kids are very perceptive. Even if he seems ok I bet he perceives that he's different, or will soon. So clearly you are doing great and there is no huge urgent crisis, but I vote for getting an evaluation into process in the next year or so. If nothing else there's a good chance it will surface an entitlement to classroom and SAT accomodations that could prove helpful.

Anonymous wrote:

For any child or teen who "might be on the spectrum or have a disability which might impact ability to be employed at the level of a job or keep a job with benefits like health care, I would suggest that you get the appropriate evaluation done for a couple of reasons. Short-term depending on what shows up, you would have the private testing results to deal with the school division in requesting a 504 Plan or perhaps an IEP which may involve their evaluation process, too. Then, as one Mom correctly noted you will likely need to have future testing done if results are no longer considered current by colleges to request disability support services.

For the possible long term, it is wise to get the disability identified and the date of onset for a developmental disability so that if later on in life an adult may not be able to maintain or job and health insurance, one will have the documentation to qualify for adult benefits such as possible: SSI, SSDI on a parents work record, Medicaid Health Insurance and/or a Medicaid Waiver. View the testing as an insurance policy for future supports. Of course, it is very hard to say what will even be in place in five or ten years in terms of any and all of these programs, but at this point in time, this is the way I would proceed if there is an unknown of future need.

THIS x1000.

My aspie is 9yo. He's highly socially motivated so his social difficulties take a toll on him. His diagnosis really helps, though, in understanding his quirks and why he has problems in certain situations (like your DS, he's a very rigid thinker and has tremendous problems with perceived injustice).

I echo what PP's recommended. Call Children's National or KKI to scheduled for an evaluation. It will be months out but insurance should cover it. Having a documented diagnosis can help his own self-perception as well as navigating needs down the road.

Anonymous wrote:

Anonymous wrote:OP, I'm a mother of an aspie who got a late diagnosis at 16. You do want that diagnosis to get early intervention, including social skills classes, speech (our DC has a speech issue), eye contact, meds, and most importantly, the autism label on school records so you can get an IEP to assist with classroom and homework. High shool is really tough for aspies - it was a tough time but we would have never made it without accommodations. You can later then apply to colleges which have the accommodations you think your son needs. Be prepared to pay for testing every three years. We had to retest before University. And be prepared for a lot of loneliness. That's just the way aspies are. The good news is that DC is going to get a degree. The bad news is that he will probably never drive and may not be employed in the conventional sense, but we are giving him every opportunity that our non-autistic kid has. I wish I had known earlier so I could have received more intervention but testing wasnt' as good as it is now.

Thank you to both PPs. That is helpful.

To this PP, I still don't know yet much about Aspergers (and of course, he may not actually receive that diagnosis.) But if he has Aspergers, he won't necessarily need academic assistance, would he? Or did your son need more assistance as school classes became more complex? It seems to me that my son almost has an unfair advantage at school, rather than disadvantage. That is, our system weighs things like test results so heavily, and he does really well on standardized tests, and tests in general, because he is strong in memory and focus. But as I read your post, I'm wondering if perhaps he will struggle more as he is asked to provide more critical thinking? Not sure.

Does your son actually feel lonely, or does he just appear lonely? That is, my son is generally alone, but he seems to like it that way.

He is actually lonely. He has no friends. It's not a skill that Aspies have. Earlier intervention might have helped us in helping DS develop social skills, tics and other alienating behaviors. School and homework was painful. We tried trendy privates but it was still too much homework. By freshman year, there was justs no way he could keep up so the IEP helped. IEP helped also with extra time on ACT (got a perfect 36). Kid is also in mensa. But the difficulty of growing up not knowing what was wrong with him and getting him early treatment took its toll. I would vote for getting a definite NT test done and fine out and get him the help he needs now.

For any child or teen who "might be on the spectrum or have a disability which might impact ability to be employed at the level of a job or keep a job with benefits like health care, I would suggest that you get the appropriate evaluation done for a couple of reasons. Short-term depending on what shows up, you would have the private testing results to deal with the school division in requesting a 504 Plan or perhaps an IEP which may involve their evaluation process, too. Then, as one Mom correctly noted you will likely need to have future testing done if results are no longer considered current by colleges to request disability support services.

For the possible long term, it is wise to get the disability identified and the date of onset for a developmental disability so that if later on in life an adult may not be able to maintain or job and health insurance, one will have the documentation to qualify for adult benefits such as possible: SSI, SSDI on a parents work record, Medicaid Health Insurance and/or a Medicaid Waiver. View the testing as an insurance policy for future supports. Of course, it is very hard to say what will even be in place in five or ten years in terms of any and all of these programs, but at this point in time, this is the way I would proceed if there is an unknown of future need.

Thank you all so much. You've given me a lot to think about.

FWIW, we have been able to have insurance cover OT (for a different sensory issue) without a formal diagnosis. (In our case, none is appropriate.). Check with your insurance to see if it is needed, but you may well be able to pursue services to help his social skills without getting a diagnosis, if you choose to.

Getting dx'd with aspergera as an adult was really really really helpful, although I 'pass' as neurotypical a PT of the time (quiet shy girls are still socialized much differently than boys). Honestly, it made a world of difference to my self-esteem to know I wasn't defective or a terrible person but that my brain works differently. I'd suggest reading articles/books written by autistic people---parents of people with autism are not the experts on autism, and in my experience perpetuate a lot of negative stereotypes and stigmas.

Anonymous wrote:

Anonymous wrote:

This, at this point he's doing well so why get an evaluation. I might do a social skills group too if you are concerned, but I'd also look at activities with similar kids, like gaming or fencing. If he goes into IT or science or another field with folks like him, he'll be fine. The diagnosis is not well accepted despite what people say.

It disgust me that people say this. PP, you, and people like you, are a huge part of the problem.

If a kid doesn't need an IEP or accommodations academically, who is to know but you, your kid, and your doctor? Seriously? Let's stop the stigma around autism NOW.

Anonymous wrote:

Anonymous wrote:I beg to differ with PPs. I don't really see the point. Your son sounds like a wonderful, successful and well-adjusted kid who is very introverted.
If he's genuinely lonely (a good question from PP) and not just alone which some kids prefer to be, I would save my money and put him into a social skills group. You don't need a diagnosis for that. Google PEERS and Dr. David Black.
Also, I know the diagnosis is very well accepted these days but there are still drawbacks and you don't know how he'll react to it.

This, at this point he's doing well so why get an evaluation. I might do a social skills group too if you are concerned, but I'd also look at activities with similar kids, like gaming or fencing. If he goes into IT or science or another field with folks like him, he'll be fine. The diagnosis is not well accepted despite what people say.

Sorry only to you it isn't. There are specific college programs for people with autism now.

And if this kid can't talk to people he doesn't know, how will he ever make it through a job interview? It doesn't matter if it's in the IT or science field.

Anonymous wrote:I beg to differ with PPs. I don't really see the point. Your son sounds like a wonderful, successful and well-adjusted kid who is very introverted.
If he's genuinely lonely (a good question from PP) and not just alone which some kids prefer to be, I would save my money and put him into a social skills group. You don't need a diagnosis for that. Google PEERS and Dr. David Black.
Also, I know the diagnosis is very well accepted these days but there are still drawbacks and you don't know how he'll react to it.

This, at this point he's doing well so why get an evaluation. I might do a social skills group too if you are concerned, but I'd also look at activities with similar kids, like gaming or fencing. If he goes into IT or science or another field with folks like him, he'll be fine. The diagnosis is not well accepted despite what people say.