13 year old DS with aspergers-like symptoms- pros and cons of diagnosis?

[Anonymous]

We have a 13 year old son, who has always shown some signs of aspergers. Even if people asked, I would say he is not on the spectrum, because my mom works with kids who have neurological issues, and she always told me he is not!
Now suddenly as an aside, she mentions it like "of course" he has aspergers. I'm so upset with her! It would be one thing if i'd never considered it myself, but I had in the past frequently asked her her thoughts. She said she thought somehow the news would scare or upset me or that I would hold it against her. I'm so annoyed, and I feel embarrassed for all the times I dismissed my friends' questions.

Anyway, that ranting aside. It might not have made a whole lot of difference, except that I think I would have done social interventions sooner.

My son manages life very well, for the most part. He's very smart, in the most advanced classes, gets straight As, and has great executive function (very organized and on top of his homework.)

However, he can't make eye contact with strangers, and even with family, I sometimes need to remind him to look at me. He doesn't have any friends, and doesn't seem to need friends. Well, he seems to have a small wish to be with friends. He went to an HGC and did better socially in that environment than he has done anywhere else. That is, he had fun with his peers, and was as accepted as anyone, but still didn't see friends outside of school. However, now that he's in a regular public middle school, he is more of a loner again.

Perhaps most disturbing to me is that he has very black-and-white thinking, sometimes to the extreme of insisting on something that seems quite irrational. Also completely unable to answer questions about feelings. It is strange, because he's very artistic and musically gifted, loves reading, but cannot talk about music or art or books (the way other people i know who love music/art/literature do). He doesn't hug people or like being hugged, and doesn't ask others about themselves. (ie, how are you, how was xyz, etc) But he IS funny and extremely observant. And while he doesn't seem to express much compassion as such, one of the things that bothers him most is when he feels someone is being unfairly judged.

Other signs he has shown that made me wonder if he's on the spectrum is he toe-walked until about age 11 (when I also got him some PT for it.) and he could speak about 100 words at age 1, and started reading at 3... He has never really interacted directly much with other kids. that is, he loves to be among kids being rowdy or goofy, but doesn't talk to kids directly. Except one kid, who we lost touch with, where they would just talk to each other in a very informational way, if that makes sense. But I thought that was just something boys did. (ie, describe a video game at length.) He loves routine. However, I thought this is true of many children. I knew he was sensitive as a kid (ie, upset by loud or sudden noises, exhausted by social interaction.) However, I just accommodated this, and his life was very low-key in his toddler years, with no screen time, few playdates, and lots of nature. I think for the most part, it was good for him. He has never been bullied and I don't necessarily foresee it. (knock on wood.) It helps that he's tall for his age, and athletic. He doesn't do anything socially that is obviously weird or out of place, except for not making eye contact, and sometimes not answering their questions (or answering so quietly they don't hear.) I don't think he'd talk to a stranger if his life depended on it, and that needs to be addressed. He does have one sibling, and does enjoy doing things together with her, for which I'm grateful.

So, my question is, what should I do now? Is there any drawback to asking the school counselor about my concern? (I did mention it to her once before, just about his social issues, and she was very relaxed and said as long as he's happy, it's fine, and he'll find his place later, maybe in college. But she hasn't actually met him in person.) I guess I'm wondering if there are any disadvantages to having him "labeled" in his school records, if we don't need any academic support or interventions? (though social ones would be useful.) I don't think we have $4000 for a diagnosis anyway (i saw that number in this forum.) What have people done to improve social skills in kids with Aspergers? (I don't need to make him social per se, I just want him to be social enough to find a job one day, and to be safe in the world.) Do people think that he would himself benefit from getting a diagnosis?

[Anonymous]

I think knowledge is power - so I think you should have an evaluation. Since your son sounds to be doing pretty well functioning now, I think the goal would be to help him gain some self awareness and explanation for why he views or interacts with the world differently.

You can get an evaluation done at Children's Hospital or Kennedy Krieger and insurance generally covers most of the cost -- but the wait is often longer.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

If you are concerned, get him evaluated. I share a lot of trends with your son, and I am well adjusted, married, ect. Some people are just like that. He sounds within norm to me, with slight deviations from the median.

[Anonymous]

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.

[Anonymous]

I agree taht an evaluation and getting services set up are important to make the environment a little more bearable for him. However, as the mother of a 7-year-old, aunt to 17-year-old and cousin to a twenty-something Aspie, I can tell you that the "symptoms" you listed are not really fixable things. Sure, you can get social skills groups going... but their eye contact is not going to really improve, nor is their desire to socialize in a more gregarious or group-like way.

I think finding acceptance for who he is, for himself, is an important piece of the diagnosis. So they don't think there is anything "wrong" with them.

At least, that's my take from my long journey living with and amongst Aspies.

[Anonymous]

Your son is unlikely to suddenly need a lot of academic help if he has been fine so far. He may or may not have trouble in the extroverted school environment when things are done in groups and class participation is graded, but he is likely to always excel on standardized testings.

I would address the social issues though. Eye contact, talking to strangers, etc. You don't need a diagnosis for that.

[Anonymous]

I would get him evaluated so that he can better understand himself. I just finished reading NeuroTribes, about the history of autism. One of the most moving parts was his interviews with middle aged men who had always felt alone and isolated -- and then, as adults they were diagnosed with Asperger's and suddenly they realized that there was nothing "wrong" with them and that they could find their community.

[Anonymous]

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.

Although a social skills group is a good idea regardless, I think an evaluation is a good idea b/c so many kids on the spectrum have co-morbidities like anxiety or depression. Often these things rear up in puberty. Plus, if he has difficulty expressing his feelings this may be related to pragmatics vs. anxiety. Inattentive ADHD may also be at play at hindering eye contact. Bottom line is that the older he gets the more important it will be for him to be able to communicate his thoughts and feelings to others as well as holding appropriate eye contact with future employers, co-workers, significant others, etc. It would be good to know what's what.

Don't beat yourself up, OP. It sounds like your kid's been getting along in life just fine, however the older he gets the more challenging the world becomes. It's best that he has the skills to handle this. If he's on the spectrum, then it might be practice, practice, practice eye contact. If he has anxiety or ADHD, medication may be an option. It's hard to aim for a target if you don't know what the target is.

Start with a social skills group, OP like Dr. Black's or Ivymount's. Hopefully things like eye contact and his ability to express himself will improve.

[Anonymous]

I do not have a child with Asperger's. My child has ADHD. But I'd like to throw something out there -- and maybe people who know more will strongly disagree.

It seems like this mom actually has a really good handle on her kid's issues. If money is tight, maybe an evaluation is not the best place to spend that money. I spent a lot of money for an evaluation and it told me absolutely nothing new about my child -- although it was helpful for the school and 504 plan. And, while we didn't have great luck with social skills classes, your son sounds like a very good candidate for one. They specifically work on things like talking about your feelings, and increasing flexibility in thinking.

[Anonymous]

look up Non Verbal Learning Disorder....sounds similar to your description. You will want that diagnosis because although at 13 no academic issue...when work becomes more complex problems can arise...accommodations might allow for lighter course load in college etc... and the driving thing may be an issue...you will want to know...and you can figure out what to do when you have more info. If anything...

[Anonymous]

If the social skills deficits are bad enough that it is hard for OP's kid to get a job and support himself independently -- which hopefully won't happen but you don't know -- she needs to have a diagnosis so he could potentially qualify for health insurance through Medicaid or even SS disability insurance.

A diagnosis while still a minor is required.

Do it for that reason, if no other.

[Anonymous]

Anonymous wrote:look up Non Verbal Learning Disorder....sounds similar to your description. You will want that diagnosis because although at 13 no academic issue...when work becomes more complex problems can arise...accommodations might allow for lighter course load in college etc... and the driving thing may be an issue...you will want to know...and you can figure out what to do when you have more info. If anything...

NVLD isn't in the DSM any longer. Kids previously diagnosed with this usually are categorized as ASD.

[Anonymous]

Anonymous wrote:Your son is unlikely to suddenly need a lot of academic help if he has been fine so far. He may or may not have trouble in the extroverted school environment when things are done in groups and class participation is graded, but he is likely to always excel on standardized testings.

I would address the social issues though. Eye contact, talking to strangers, etc. You don't need a diagnosis for that.

You do if the reason has to do with anxiety or ADHD and medication is needed. You need one regardless of what it is for health insurance reimbursement for speech therapy, social skills group or whatever the treatment may be.

I feel like people are so reluctant to recommend an evaluation just in case the diagnosis comes back "officially" as autism. Doesn't change any of the wonderful things about your kid. It's also fine to be an introvert as long as he's not unhappy or lonely.

OP, I wouldn't worry about the academic accommodations. However, your teen son is lacking in some basic daily living skills. That's a huge red flag. It doesn't matter if the reason is that he's on the spectrum or not. It will help if you know why he has these issues.