X-Post: Aspie advice needed from moms who've BTDT

[beachnut]

(Just discovered this Special Needs board, so excuse the cross-post.)

 

Is it too late to get a diagnosis for my 15yo son, whom I suspect may have Asperger's Syndrome? I never even knew what this was until a few months ago, and it seems to explain a lot.

 

Quick background: My son has always struggled to make and keep friends, and the situation seems even more noticeable now that he is high school age. He went to public school for grades K-1 and 6-7 and never made any real friends in this setting. (He does have 2 or 3 friends that he occasionally does things with. But it is not on a regular basis. And he seems to seek them out more than they seek him out.) He's had various quirky behaviors over the years, but nothing severe. He is highly functioning, tested as gifted (does that matter?) and seems socially awkward (more so than the typical, awkward teen boy). Now that he's in 9th grade, he takes art and band classes at the local high school, and I was hoping things would click with a few of the marching band members. But, 7 months into the school year, he has yet to make a real friend. (He seems to think he has friends at high school, but really they are just acquaintances. No one ever calls him or invites him to do anything on the weekends. It is breaking my heart.)

 

Would it be crushing to his self-esteem to seek out a diagnosis this late in the game? Would it even matter at this point? What positive things could result from such a diagnosis?

 

Please advise.

[MamaSheep]

There are pros and cons to getting a diagnosis. Also, you might also like to know that in the new diagnostic manual Asperger's Syndrome is going away as a diagnosis, and will be folded in with "Autism Spectrum Disorder", so don't be alarmed if someone hands out that diagnosis instead of Asperger's. And no, being gifted makes no difference to the diagnosis, except that under the old diagnostic criteria a person had to be of average or above intelligence to qualify for a diagnosis of Asperger's. That's not the case for the new ASD designation because of the other aspects they're combining in.

 

Pros - He might qualify for social skills training through the school's special ed program. He might also qualify for extra help through a disabilities department at college, if he has trouble with note-taking, needs extra time for testing due to slower mental processing, etc. And if he winds up having difficulty holding down a job due to his social awkwardness he might qualify for disability benefits.

 

On a more personal note, some people find it a big relief to discover they really do have some different physical things going on in their nervous system that make some things harder for them, and it's not that they're just dumb, or incompetent, or clueless, or whatever they've been telling themselves all these years.

 

Cons - For some people, it's discouraging to have a label attached to their differences. You know your son best and would have a better idea than anyone here about whether he'd find a diagnosis a relief or a burden.

 

In some areas health insurance companies do not cover developmental disabilities (both Asperger's and ASD are considered developmental disabilities because even if the person is a genius some of their physical / mental / social development takes a different course than "typical" people's.)

 

That's all I can think of just now, I hope it's helpful. Hugs and best wishes!

[Lecka]

My cousin was diagnosed as a young adult with Asperger's. I think it has its pros and cons. I come out for pro overall.

 

He took some social skills classes and started an anti-anxiety medicine soon after he got diagnosed. These two things made a big difference for him. He seemed more at ease, and had an easier time talking to people.

 

My aunt and uncle have taken him to a job counselor, but at their location, it turns out not to be a really good program ---- they have heard it is better at other locations.

 

The con is that it has been hard on my aunt and uncle. My cousin was born premature and for many years doctors told them he was delayed but would improve with age. He does improve with age. But it is hard for them to have this diagnosis instead of hoping he will grow out of it.

Edited March 13, 2012 by Lecka

[Barbara H]

My main question would be: Is he struggling in ways that bother him? Does he struggle with anxiety, attentional problems, sensory dysfunction, or is he bothered that he's having difficulty making friends? If he's not comfortable in his own skin or you see that he's feeling bad, that would drive me to seek out help, which may or may not come in the form of an ASD diagnosis. For some kids understanding factors like introversion, giftedness, geekiness - that may be enough to give them a positive explanation and some support in working on finding what they need. Some kids need more.

 

A first step may be to make a list of the symptoms that you are concerned about and then evaluate how much they are bothering him now and how much you see them bothering him in the future. If he plans to go to college, do you think he will need any special plans or supports to make that successful?

 

One factor that is worth considering is that with a teenager you still have some control, much more than you will at 18 years old. There is a window open now where you could for example enroll him in social skills classes when later that may not be accessible. Whether it ends up being called Asperger's or something else, these are the years where you still have influence to help him learn to cope with these traits. If he is on the spectrum those concerns don't just go away at the end of the teenage years - there will be stuff he needs to manage at work, in relationships, if he gets married, etc.

 

The ASD diagnosis can be such a mixed bag and it really depends on how it is handled and what resources can be put in place. If it gives him access to a social skills group or therapies or needed accommodations for college it may be worthwhile. But, some teenagers do hear it as criticism, as you are so different there is not hope, or as a sign they may struggle to get married or a be a parent.

[Dandelion]

You've gotten some great advice above.

 

I think the main question to ask yourself is: "What do I hope to gain for my son with a diagnosis?"

 

If you plan to seek services for your son (i.e. social skills group, therapy, college accommodations, other), then a diagnosis will open up doors for that. If you think your son would benefit from having a name and context for what he's been experiencing all of his life, then a diagnosis can be a positive thing.

 

If you don't plan to seek services that require an official diagnosis, and you think a diagnosis/label might affect your son negatively, then you're probably better off without it at this point. Even without a diagnosis, you can still help your son and create various supports/accommodations (check out some books on Asperger's if you haven't already - Tony Attwood's "Complete Guide to Asperger Syndrome" and the "OASIS Guide to Asperger Syndrome" by Patricia Bashe and Barbara Kirby both provide comprehensive advice).

 

On a personal note, my son really embraced his Asperger's diagnosis (diagnosed at age 7 - he's now 8.5) and I think it's been a positive thing for him. We sought the diagnosis because I wanted to get him into occupational therapy and a social skills group. He's also gifted and very high-functioning - had it not been for the access to services, I probably would not have sought a diagnosis.

 

All the best to you as you make this decision!

[Guest]

I have not btdt and therefore have no advice to offer. I just wanted to say thank you to those who posted replies. I have often struggled with my decision to not get a diagnosis at this time. I have often felt that I probably don't fit in with everyone else on this forum. Seeing how you have all balanced your replies with pros and cons makes me feel a bit better about waiting it out and trying to work on issues on my own for now. Thank you :).

[AngieW in Texas]

My oldest wasn't diagnosed until she was 18yo and I didn't even really suspect it until she about 15yo. We knew the middle dd was on spectrum from the time she was a toddler, but didn't ask for a formal diagnosis until she was 16yo.

 

It can help with getting services. With the formal Asperger's diagnosis, my 18yo was able to attend the Asperger's Support Group on her college campus at no charge and could have taken their social skills classes at no charge as well. Unfortunately, she decided that other people with Asperger's were annoying and only went to the support group twice. She didn't think she needed the social skills classes, so she didn't sign up for them. She ended up sinking into a deep depression over her inability to make friends and only lasted two weeks into the spring semester before we brought her back home.

 

The school was great about deferring her scholarship to spring semester and she is signed up for social skills now that are starting next week. Now she does understand that she really does need the classes.

 

The diagnosis hasn't done anything to help my 16yo, but she hasn't really needed anything yet.

[beachnut]

A HUGE thank you to everyone who replied. This is all fairly new to me. I didn't even know what Asperger's was until a few months ago. And I'm still not sure that's what my son has. But it sure seems like a lot of the characteristics/symptons fit the bill. And it sure explains a LOT over the years.

 

Either way, he could use some social skills training. I'm not really looking to get any meds prescribed or special accommodations for testing or anything. My main goal is for him to be happy and have friends. Simple enough, right? Yet seemingly so hard right now.

 

You've given me a lot of food for thought here, and some great resources to check out, so I thank you from the bottom of my heart for sharing your experiences with me.

[Guest]

A HUGE thank you to everyone who replied. This is all fairly new to me. I didn't even know what Asperger's was until a few months ago. And I'm still not sure that's what my son has. But it sure seems like a lot of the characteristics/symptons fit the bill. And it sure explains a LOT over the years.

 

Either way, he could use some social skills training. I'm not really looking to get any meds prescribed or special accommodations for testing or anything. My main goal is for him to be happy and have friends. Simple enough, right? Yet seemingly so hard right now.

 

You've given me a lot of food for thought here, and some great resources to check out, so I thank you from the bottom of my heart for sharing your experiences with me.

 

Lisa, I am not sure my son has Asperger's either (ADHD has been another I have been looking into in our case), so, much like you I started researching by coming on this forum and getting books about it. One book that has helped me get a sense of direction with some workable tips, has been Temple Grandin's book "The Way I See It". Check your library and see if it can help in some way :). I also highly recommend Attwood's book that was already mentioned and I intend to get Grandin's book "The Unwritten Rules of Social Relationships" at some point in the future.

 

All the best to you and your boy :)

[Misty]

Would it be crushing to his self-esteem to seek out a diagnosis this late in the game? Would it even matter at this point? What positive things could result from such a diagnosis?

 

Not crushing at all.. It would help him to understand himself and why he is the way he is.. He already knows he's different, but he's probably applying his own labels.. Things like "slow" "stupid" etc. and this will set him up for depression and anxiety and even social phobias, etc. Even if he tests gifted and knows he is academically advanced.. He still may label himself negatively.. He needs to know what his true label is so that it can empower him and he can feel comfortable in his own skin.. He will also be able to relate to others who have Asperger's, connect with other Aspies, and know he's not alone. There are books that have been written by people with Asperger's.. One book comes to mind called Freaks, Geeks, and Asperger's Syndrome, which was written by a 13yr old boy with Asperger's.. Reading books like these may help him to finally make sense of his life.. He's probably trying to make sense of it all just like you are. I'm sure he's wondering why it is that he can't make friends but all the other kids can. He needs answers.

 

Many Aspies don't get diagnosed until their teens and some never get diagnosed.. It's never too late.. My oldest daughter was not diagnosed until age 14.

 

Be sure to approach the subject of Asperger's with him in a positive light.. Point out all the cool famous people who have Asperger's (Pokemon creator, for instance), point out the special talents they possess and how successful they can become because they tend to attain expert level in their area of interest.. Don't act like it's a great thing to have, but don't act like it's a devastating illness either. There's a delicate balance there. My 14yr old loves her brain.. She has hyperlexia, synesthesia, and she is creatively gifted.. She writes fiction obsessively and she also reads obsessively.. She's very talented (with writing/creativity) and full of encyclopedic knowledge. Quirky, rigid, obsessive, and sensitive.. along with terrible penmanship and barely hanging on with math.... But very talented otherwise.

Edited March 15, 2012 by Misty

[MamaSheep]

Another great book is Quirky Yes, Hopeless No. My 14yo Aspie bought it for me about a year ago. He sat down and started reading it, and ended up highlighting things for me because he felt it described his life so well. My dad was visiting not long after and happened to pick it up. He sat there for probably an hour or more just devouring it, and told me later that he thought he might have AS too (I've suspected), as it explained so much about his earlier years. I really like it.

[Julie in MN]

My main goal is for him to be happy and have friends. Simple enough, right? Yet seemingly so hard right now.

I saw your post on the high school board and checked in here to see if you got some help. Glad to see the warm support you got. I have a dd who is 24 now and likely Aspberger's though never diagnosed formally. I agree it's a hard decision. We just didn't feel the risk of losing job opportunities etc was worth the benefits we saw in therapy at the time, although things have probably improved. I'm not sure a diagnosis would have helped her academically, but I do think it could help her in a few areas of her life now at age 24, especially in her relationships with others and also when learning new skills. However, we just continue to help her with these things ourselves and it seems to be working okay. It wears us out, but dealing with therapists with wrong ideas and all the appointments and such wore us out, too, when we went through that once. In an ideal world, I'd love for her to have an outside coach/mentor/therapist on hand, without necessarily a diagnosis.

 

Anyways, I mostly wanted to add that "happy and have friends" can mean different things to different people. Most of the kids I know on the spectrum are young adults now. They didn't necessarily grow up wanting friendships in the same way you might remember from high school. (And I'm not even sure most high schoolers have the kids of friendships we remember, but that's another thread...) Most I've known were very close to their families, and I think homeschooling is perfect for that. One gal in my Girl Scout troop was quite close to me as her leader, and she still calls me on occasion as a college student. That gal also became quite close to one of the men in the nursing home where our troop met; he was mentally fine but functionally mute, unable to even write, and they just understood each other. Another gal I know of in an online friendship with her mom has a special interest in horses, and seems more aware of their needs than the average teen.

 

I just agree with the others to allow your son to take the lead in what he needs at this age, rather than assuming he needs something you remember as a positive experience. Sometimes trying to put these kids into social situations creates a loneliness that wasn't there before. At least, if they are by themselves or with adults who don't understand.

 

 

One book that has helped me get a sense of direction with some workable tips, has been Temple Grandin's book "The Way I See It".

Thanks for that recommendation. I have been very inspired by listening to Ms. Grandin in this video:

http://stalecheerios.com/blog/training-videos/temple-grandin-movie-review/

 

 

Another great book is Quirky Yes, Hopeless No. My 14yo Aspie bought it for me about a year ago. He sat down and started reading it, and ended up highlighting things for me because he felt it described his life so well. My dad was visiting not long after and happened to pick it up. He sat there for probably an hour or more just devouring it, and told me later that he thought he might have AS too (I've suspected), as it explained so much about his earlier years. I really like it.

Too funny that your son recommended it to *you*!

 

And about your dad, I've heard so often that there are other family members who show signs. My sister reminds me so much of my dd that I often confuse their names, and no one can understand why :) My sister just this year agreed that she learns things similar to my dd -- very slowly and very accurately. Anyways, I'll have to read that one, too!

 

Julie

[Guest]

I saw your post on the high school board and checked in here to see if you got some help. Glad to see the warm support you got. I have a dd who is 24 now and likely Aspberger's though never diagnosed formally. I agree it's a hard decision. We just didn't feel the risk of losing job opportunities etc was worth the benefits we saw in therapy at the time, although things have probably improved. I'm not sure a diagnosis would have helped her academically, but I do think it could help her in a few areas of her life now at age 24, especially in her relationships with others and also when learning new skills. However, we just continue to help her with these things ourselves and it seems to be working okay. It wears us out, but dealing with therapists with wrong ideas and all the appointments and such wore us out, too, when we went through that once. In an ideal world, I'd love for her to have an outside coach/mentor/therapist on hand, without necessarily a diagnosis.

 

Anyways, I mostly wanted to add that "happy and have friends" can mean different things to different people. Most of the kids I know on the spectrum are young adults now. They didn't necessarily grow up wanting friendships in the same way you might remember from high school. (And I'm not even sure most high schoolers have the kids of friendships we remember, but that's another thread...) Most I've known were very close to their families, and I think homeschooling is perfect for that. One gal in my Girl Scout troop was quite close to me as her leader, and she still calls me on occasion as a college student. That gal also became quite close to one of the men in the nursing home where our troop met; he was mentally fine but functionally mute, unable to even write, and they just understood each other. Another gal I know of in an online friendship with her mom has a special interest in horses, and seems more aware of their needs than the average teen.

 

I just agree with the others to allow your son to take the lead in what he needs at this age, rather than assuming he needs something you remember as a positive experience. Sometimes trying to put these kids into social situations creates a loneliness that wasn't there before. At least, if they are by themselves or with adults who don't understand.

 

Thank you for your post. I really enjoyed reading it, probably because you sound so much like me and my way of thinking :). Your post makes me hopeful for the future!

 

Thanks for that recommendation. I have been very inspired by listening to Ms. Grandin in this video:

http://stalecheerios.com/blog/training-videos/temple-grandin-movie-review/

 

Temple Grandin is my hero :)! I find her so inspiring, I wish she could be my son's mentor when he gets older! Too bad that is not possible! Adrian and I have watched her movie together and we could both relate to her thinking in pictures (we are both that way, actually so is my husband). I honestly don't care about my son being labelled. That would not change anything in our life or his. My concerns are what you shared above. The possibly limiting job opportunities in the future, etc. Even ADHD kids on Ritalin for example are not eligible for enlisting in the military in the US (not sure about here) so sadly and behind closed doors the labels do seem to still impact peoples' lives. Hopefully things will change in the future, in that regard!

[Guest]

I have been very inspired by listening to Ms. Grandin in this video:

http://stalecheerios.com/blog/training-videos/temple-grandin-movie-review/

 

Thank you for linking this! I had not seen this lecture before. I wish she could wake up the school system that seems to be going further and further away from a science focus. So many of these kids, this is the area that they excel in!